Jan. 2, 2026

017 From Tragedy To Advocacy: Raising Awareness For Connective Tissue Disorders

017 From Tragedy To Advocacy: Raising Awareness For Connective Tissue Disorders
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A 15-year-old athlete. A hidden aortic time bomb. A family who refused to let the story end there. We sit down with Lucas’s parents, Jeanette and Mike, to trace the moments that followed his sudden passing and the answers uncovered by a post-mortem diagnosis of Loeys-Dietz syndrome. What emerges is a clear, compassionate roadmap for parents, coaches, and clinicians to recognize connective tissue disorder red flags earlier—and a powerful vision for turning grief into prevention.

Jeanette takes us through Lucas’s early medical puzzle: bilateral clubfoot, months of casting, a tenotomy, braces, and visits to a half-dozen specialists. Tall, thin frame. Long wingspan. Long fingers. Pectus. Hyperflexibility. A bifid uvula only visible during routine exams. Each clue made sense on its own; together, they were a pattern. Mike explains how awareness lag and a missed genetics checkbox in 2011 kept the diagnosis out of reach. Their message isn’t blame—it’s better systems: when multiple anomalies stack, order an echocardiogram, ask family history, and consider genetics for Marfan, Loeys-Dietz, and related aortopathies.

We also talk about the question that won’t let go: what if we had known? The answers are honest and human. They would have changed sports, monitored blood pressure, and built care around risk. Yet they’re grateful Lucas lived brightly—parasailing, water polo, open-water swims—and that his spirit keeps nudging them forward. Faith, small signs, and a favorite Interstellar line—love transcends time and space—become daily fuel.

Action is the throughline. Jeanette and Mike now co-chair South Florida’s Walk for Victory with the Marfan Foundation and invite you to join Team Lucas. Expect on-site screenings, a community “Lucas” workout, and a space where fundraising directly fuels research, education, and earlier diagnosis. They also support Run for Life at Zoo Miami, honoring Lucas’s choice to be an organ donor; his corneal donation through Beauty of Sight has already helped others see.

If you’re a parent, coach, or health pro, you’ll leave with practical red flags to watch for and a renewed sense of what advocacy can do. If you loved Lucas, or love someone like him, come walk beside us. Subscribe, share this episode with a friend who needs it, and leave a review to help more families find these resources. Then join Team Lucas at the Walk for Victory and help turn awareness into lives saved.

Send us a voice note, check out show notes and more at our site: https://www.fitnessfiasco.com/

Host Mike - https://www.instagram.com/mikeosunafitness/

Host Erik - https://www.instagram.com/erikbustillo/

Host Rob - https://twitter.com/RobStrength

The Fitness Fiasco Podcast provides general information on health, wellness, and fitness and should not be regarded as professional medical advice, treatment, or diagnosis. No doctor/patient relationship is established through this podcast. Listeners are responsible for their use of any information or resources shared in this podcast or associated materials. This podcast's content should not supplant consultations with qualified health care professionals concerning any existing medical conditions. It is crucial for listeners to avoid disregarding or delaying professional medical advice based on the information provided in the podcast. Remember to consult your health care provider for personalized guidance on your health and wellness journey.

00:00 - Return After Loss

00:52 - Meet Jeanette And Mike

08:48 - Why Share Lucas’s Story

12:24 - Finding Community And Purpose

18:12 - Understanding Connective Tissue Disorders

24:14 - Missed Signs And Diagnosis Gaps

31:45 - What If We Had Known

37:12 - Parenting After The Unthinkable

41:40 - The Day Everything Changed

58:25 - Media, Rumors, And Autopsy Truths

01:07:36 - Faith, Signs, And Staying Present

01:16:02 - Interstellar, Love, And Meaning

01:21:05 - Turning Grief Into Action

01:27:10 - Walk For Victory And Team Lucas

01:35:20 - A Vision For Better Screening

01:40:50 - Gratitude, Support, And Next Steps

WEBVTT

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Welcome back to the Fitness Fiasco podcast.

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And we are coming back after a seventh seven-month break due to the events that surrounded our co-host Mike Osuna.

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On March 28th, his son, Lucas Osuna, passed away due to a aortic dissection due to complications from Louis Dietz syndrome, which is a connective tissue disorder.

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And that was two weeks before Lucas' 16th birthday.

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And today, Eric and I are gonna sit down with Lucas' parents, Mike and Jeanette Garcia Osuna, and discuss the events that surrounded that day as well as everything that's occurred in their lives in honoring Lucas and bringing awareness to Louis Deeps, Louis Diet's syndrome, Marfan syndrome, and connective tissue disorders as a whole.

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Mike, Jeanette, Jeanette, especially, thank you so much for coming this morning.

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Jeanette, who are you?

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And tell me a little bit about yourself.

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Absolutely.

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So first of all, thank you for having Mike and I on to talk about Lucas.

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Um it's funny, there's nothing more than I love than to talk about Lucas.

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So to be invited to do so fills me with a lot of happiness.

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So my name is Jeanette.

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I think above all, I'm Lucas's mom.

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I was blessed to have Lucas um on April 12th, 2009.

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And I'm a preschool teacher at Wesley Matthews Elementary.

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I've been there for 27 years.

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And I'm excited about talking today.

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So thank you for having me.

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Thank you.

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Thanks for being on you.

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Uh well, for uh our usual six listeners, you guys know me, Mike Osuna.

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I'm a 20-year firefighter for Palmage County Fire Rescue.

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I own CrossFit Coconut Grove, uh, otherwise known as Train 89.

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And we've been doing this podcast for about two years now, on and off.

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We call them seasons.

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We come on here, we record stuff, and it's usually about you know, looking back at it, stuff that's important in our industry, in the health, and to our listeners and our audience.

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But in the grand scheme of things, uh things are the kind of um not as important these days for us for our family.

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So uh I'll give you a little bit of of background.

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And Jan and I, Jeanette and I, Joker and Jess, my wife, we're always very comfortable talking about this.

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Uh Jan and I uh met uh about 20 something years ago.

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Uh we were connected by a what we call Cupid, Linda Horta Horta.

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And we got married, and shortly after that, we had Lucas.

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And uh Lucas was born with some complications, which I'll let Jan kind of describe a little bit.

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She's a little bit better historian and a better storyteller than I am.

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Um but shortly, not shortly, a couple of years after, uh Jan and I uh decided it was best to get a divorce.

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So we got a divorce, but we are what they call now blended family.

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So we've pretty much just been four of us raising Lucas until my little ones were born, Nash and Kalia, uh through Jess.

00:03:26.560 --> 00:03:28.159
So it's Lucas had four parents, right?

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Lucas had two dads, myself and Joka, and then two moms and Jan and Jess.

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Um we we, although we had parenting rules, I can't remember what the protocol is that the court makes you fill out.

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We were incredibly flexible.

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Uh we always uh tugged at Lucas, trying to spend as much time with him as possible.

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Holidays were fun, trying to figure that out, but we always made it work and we always put Lucas as a priority.

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Um, I've always made this comment, which I don't think Jan has ever heard me say, but I've always said that I've I divorced the best woman in the world because when I hear horror stories of other families going through divorce, even separations on how they battle and they're incredibly petty with a lot of the things.

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It that was never the case on our part.

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It was very clean-cut divorce and the communication was there.

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Um, clearly, not everything was sunshine and rainbows, but like we said, we always made sure to put Lucas first and we focused on him and his health.

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So um I appreciate you guys, you know, Eric and Rob sitting down.

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I know that this is it's probably difficult for you guys as well, because you guys have known me for almost uh one and a half decades now.

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And um so I'm glad that you guys decided to do this.

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The the main reason that we're doing this is to one, honor Lucas.

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Two, we believe that it's important to spread awareness for connective tissue disorders as a whole, Marfans, Louise, Dietz, Veds.

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Um, and we have uh found a wonderful community in the Malfat Marfan Foundation and in other parents that have lost their children in a very similar fashion.

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That we have an undiagnosed case of a connective tissue disorder, which obviously has rocked our world.

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And um and we're here to spread that message and then hopefully gain some support for the walk for victory, um, and and the the what's the name of the other walking?

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It's the Run for Life, which is um beauty of sight.

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I'll talk to you a little bit about Lucas being a an organ donor, too.

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Yeah, so I appreciate you guys, you know, sitting here on this Sunday morning and discuss this sensitive topic.

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For sure.

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Absolutely.

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I think that uh something that's important to note is that um uh so before I I coach every class here in the gym, uh I always take a moment of silence for for Lucas.

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Um and this wasn't something in hindsight, I'm like, damn, maybe I should have asked Mike to do it, but I was kinda it just felt right to do it.

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Um I like it's not like I was the closest person to Lucas and nor him to me, but we were connected.

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I was able to coach him a couple of seasons in flag football, uh thanks to to Mike thinking that I would be good enough to be in that position and either some sort of a role model and and helping in whatever which way.

00:06:26.879 --> 00:06:52.560
Um but the I kind of just wanted to say this early on is that not not getting very religious or anything along those lines, but he he his physical form isn't here, but he in my eyes he continues to live, and especially as we continue to say his name and honor him, like in this episode, like what you guys are saying, I think is important.

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That's why before every class that I coach and people also know like why I do it, and I don't always explain who Lucas is, but I always I I talk about him as if he's still here with I say he is Mike's son.

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Mike is one of the owners of the gym.

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Those of you who may not know, I'll I sometimes will briefly tell the story.

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I don't always go into it, I just say if I could have everyone's attention, if you could please just join me in a brief moment of silence for Lucas Osuna.

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I greatly appreciate that.

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We pause and then I say thank you everyone when I go into what the workout is.

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Um but I think it's important to have these conversations and sometimes people will ask who is he or who was he or what whatever which way they word it, and then I'm like, cool, this is an opportunity to let them know who he is, and then the fact that you all are have kind of become champions for perhaps the connective tissue disorder community, and to continue to talk about Lucas, I think is huge.

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So I think I don't know.

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I I think maybe I speak for Rob also when I say that thank you guys for being here.

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Thank you.

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Thank you for that.

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Yeah, and I've heard uh I've heard through the grapevine that you do do that before every class, and that means a lot.

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It's very special.

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The same way that uh Lucas's banner hanging from the rafters here is very special to me and uh and a beautiful surprise.

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So I appreciate you doing that and honoring Lucas.

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Yeah.

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It I know there are gonna be a lot of people that that honor Lucas in their own ways.

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Um over these last seven months, how have you felt that your newfound community that you're now a part of?

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How how how have you guys how how open were you to joining the groups associated with the Marfin syndrome and what are some of the benefits that that you've now found through like individuals that have experienced the same trauma, the same, the same disastrous life events that that you guys have?

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I think it's safe to say that um Mike and I are at different speeds.

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Mike sort of has different projects than than mine, but we also blend them.

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I sort of like to use the analogy that like Dash from The Incredibles, that amazing like energy that he has.

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That's sort of the energy that I have.

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The love that I feel for Lucas will always be there.

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But since he's not here physically, like you said, Eric, and I can't be that helicopter mom anymore.

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I've sort of had the opportunity not to dive into other projects.

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The Marfan community, like Mike was saying earlier, has some spectacular, not only families, but different avenues to help us.

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Um, connective tissue, uh, specialist doctors, cardiologists, genetic counselors.

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Uh, this walk that Mike was talking about, the Marfan walk for victory.

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I mean, we have our own walk coordinator.

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I mean, these people are there to to to guide you, to lift you, to help you in any way, shape, or form to support you.

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So it's a beautiful community that we're now a part of.

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Lucas used to tell me, Mom, get a hobby.

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And it's it's it's funny.

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Like, can you just get out of my room, get a hobby, get a life?

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And I and I chuckle now because here I am with so many new hobbies.

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You know, there's the breakthrough scholarships, there's a chapter now at Balen.

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It's it's just it's wild how many all of a sudden, how many hobbies I have.

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So, and it's all about honoring Lucas and spreading awareness and advocating and helping anyone that that that will listen to us so that it doesn't happen to them and to support the ones that are going through it.

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Yeah.

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We were uh unfortunately thrown into this community a couple of months.

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Uh Lucas passed away at the end of March.

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I believe the conference was in May, so three three months after in Atlanta.

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And um, like I said, and I'll continue to to to repeat this is not knowing that Lucas had what's now very prominent in our world in a conversation that happens daily, a connective tissue disorder.

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When we first found out about it, about it, of course.

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Sorry, I lost my voice.

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We went above and beyond trying to figure out what is connective tissue disorders, what is Marfan, and come to find out he didn't even have necessarily Marfan, the gene of Marfan.

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He had what's called Louise Dietz, an even more rare condition.

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And the one that he had, which is type 2, is uh life-threatening for children his age.

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So we were thrown into this community, and I remember flying up to Atlanta, and I mean, any parent out there could just almost imagine what we go through on the emotional side.

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And even yesterday I met a gentleman, I saw a gentleman at a restaurant and he gave me a hug.

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You know, he did the help, the head tilt, and he gave me a hug, and he embraced me uh uh very firmly, and he said, You guys are so strong.

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And I said, the only thing that we can be is strong.

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I don't really necessarily know what that means anymore.

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Um the the you're so strong, but anybody that their child, in my opinion, that their child passed away from a condition that they have never even heard of, even if they did hear it, they're going to try to flip over as many rocks as possible to find out what is it, what took my son's life at 15 years old.

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So, although very emotional and very difficult to hear and sit through some of these seminars and lectures and meet other kids that all look like could be somewhat related to Lucas.

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Um we have this voice, or like Eric says, this spirit of Lucas saying, don't let this passing happen in vain.

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You know, you now have been giving a cross to bear, which is raise as much awareness as possible.

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Um, it's only been seven months and uh time has basically stood still for, I could say all of us, I could speak for Jess and I in particular, that it still hurts is the moment we found out.

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But we know that we have to push forward for our little ones and for the folks out there that have never heard of those conditions, that maybe if we're able to save one life, or maybe if we're able to raise awareness to a family that can now get their children tested and proper treatment in order so that they don't go through this.

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Now, we have fought with this, you know, you you you negotiate with God as you go through this process.

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And even if we would have known that Lucas had this condition, he very well, very well may have still passed on March 28th, right?

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This is how lethal these conditions are.

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But not knowing is where a lot of the other emotions come into it, the the the regrets, the anger, the guilt, the uh the the passion to help others.

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So the community has uh welcomed us with open arms, and they have a lot of them are leaning on us now to help raise awareness for those folks because they know that Lucas has a powerful story.

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You know, we discussed that Lucas could have been at school when it happened, Lucas could have been home when it happened.

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It happened in a public setting in front of people that got picked up by the media.

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And although having our personal life splattered on the news at first was very difficult to handle.

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And um, the phone calls, the text messages, Eric described it, you know, prior to this recording, of how quickly that news spread across Miami-Dade County, even to other states.

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We met uh uh a woman that she was, I believe, in Denver, and she heard Lucas' story immediately once it got released.

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We now use that as like this is the platform that we've been given, and his passing was meant to be so impactful so that we can now have a platform to spread the message of what Louise Dietz is, something that we wish would have crossed our table 12 years, 15 years, two years ago, so that we could have turned around and said, hmm, Lucas kind of does fit the bill of what a Mar fan or a Louise Dietz patient would look like.

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Maybe we should go get him genetically tested, and maybe we should seek further um uh advice from medical professionals to say, like, let's rule this out, type of thing.

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So, you know, our whole thing now is using that community and its platform to help spread the message.

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And if we gotta be their um their speaking tool, then so be it.

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And what are some of those factors that you're trying to raise awareness of regarding the the visual appearance of or side effects of of Marfan or Louis Deeds?

00:16:14.960 --> 00:16:22.240
Yeah, so there a couple days after Lucas passed, there was a uh uh doctor by the name of Dr.

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Alan Stewart, and his his video was sent to me by a close friend of mine, Virginia.

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She said, Hey Mike, I don't mean to intrude, but you know, watch this video real quick.

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Now, prior to the video being released, we had uh a group phone call with the medical examiner that did Lucas' autopsy.

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And the first thing she said is he passed away from an aortic dissection.

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And the second thing she said is has Lucas ever been tested for morphans?

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Which is the first time that we ever heard that word.

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In that scramble, we uh she asked us if if he could get if she could uh do some genetic testing on his blood and his tissue to confirm that he does have a connective tissue disorder.

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So of course we said yes.

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But in that, uh Dr.

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Adam Stewart releases his video and he talks about uh Lucas' appearance and that he fit the bill because some patients some they they have all of the symptoms, some of them have some of the symptoms.

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But when you look at Lucas, he had the long fingers, um, he had the protruding chest, he had the incredibly long wingspan, very thin, very tall.

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His growth spurt was huge over the past couple of months.

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And he was incredibly flexible.

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These are all physical traits that you could look at a child and say, man, the let's question it, if you would, right?

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Our biggest fear when this first happened was sending people on this um, you know, fear-mongering or scaring parents that have tall, long kids.

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I was a tall, long kid.

00:18:05.359 --> 00:18:07.039
Jan is how tall are you, Jan?

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Five nine?

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Jan is five.

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So we're But what you said didn't really, yeah, it sounds like you except for the flexibility component.

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You're you're all those except not flexible.

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Exactly.

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Um stiff as a board.

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So it it wouldn't raise concerns for the typical when I look at Lucas, I saw myself, especially in that age, anybody that knows me through my junior high, my Riviera, and my early core park days, they're like, that's Mike.

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Mike, I I I won, they made up a superlative for me, which was most changed for since sophomore year, because I was tall, skinny, lanky, and then I just put on weight, put on muscle, and I became a somewhat rather big kid.

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And that's what I saw in Lucas.

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So nothing ever raised a concern.

00:18:49.039 --> 00:18:52.480
We met a wonderful family, and my mom, her name is Bridget.

00:18:52.640 --> 00:18:55.920
Bridget lost, Bridget Metz lost her child, Connor.

00:18:56.640 --> 00:18:59.119
Almost the same exact way that we lost Lucas.

00:18:59.440 --> 00:19:04.640
Undiagnosed child uh passed away in the ER from an aortic dissection.

00:19:04.960 --> 00:19:13.279
And she she's coined this term that Lucas wore Marfan or wore Louise Dietz well.

00:19:13.440 --> 00:19:27.359
Because if you Google Louise Dietz, what you're gonna see is uh the worst physical traits picture of a Louis Dietz patient very wide, separated eyes, ears hang low, super big forehead.

00:19:27.519 --> 00:19:32.640
So when you look at a child like that, you think, okay, clearly there's something wrong here.

00:19:32.799 --> 00:19:36.079
Like that there should be further testing, if you would, right?

00:19:36.559 --> 00:19:41.680
But Lucas wearing his Louis Dietz well never really raised a concern.

00:19:41.920 --> 00:19:46.240
When you blend Jan and I together, you're like, okay, you could justify these physical traits.

00:19:46.319 --> 00:19:54.079
So to answer your question, one of the physical traits that he had, but isn't often seen, is a bifid bifid uvula.

00:19:54.400 --> 00:19:58.160
So the little bell in the back of your throat, his was split in half.

00:19:58.319 --> 00:20:09.359
And we just thought it's Lucas being Lucas, like this crazy little thing, but you can't see it unless you're a pediatrician or a doctor and you check his throat, like you always do, and then you're like, oh wow, this kid has a split uvula.

00:20:09.759 --> 00:20:13.279
That is a talltale sign of a connective tissue disorder.

00:20:13.440 --> 00:20:16.480
Um, and along with the the other symptoms that we mentioned.

00:20:16.640 --> 00:20:20.160
So this is where a lot of the anger came from.

00:20:20.319 --> 00:20:24.400
Like, how did he make it through 15 years of life?

00:20:24.559 --> 00:20:35.920
And and Jan, if if she could describe to you Lucas's childhood, with through all the pediatrician, I'm sorry, through all the practitioners that he saw, and it never came up.

00:20:36.079 --> 00:20:38.000
That topic never arose.

00:20:38.400 --> 00:20:39.920
So um, yeah.

00:20:41.279 --> 00:20:57.440
Jan did so Mike just said about childhood, significant events in childhood that also Um so so yeah, I don't know if it's important or not to to mention, but Mike and I had two miscarriages prior to Lucas and one shortly after.

00:20:57.920 --> 00:21:07.119
But um when we went to the um to the ultrasound to have the sex of the baby of Lucas, you know, told to us.

00:21:07.359 --> 00:21:10.960
Congratulations, mom, dad, you are having a boy.

00:21:11.279 --> 00:21:15.119
Um, I remember saying, you know, can can my husband leave now?

00:21:15.200 --> 00:21:16.240
He's got to go back to work.

00:21:16.400 --> 00:21:20.480
And the tech said, you may want to stick around, you know, the doctor's gonna want to talk to you.

00:21:20.559 --> 00:21:22.240
And I thought, my God, now what?

00:21:22.799 --> 00:21:28.559
And uh at 18 weeks, we found out Lucas was gonna have the the bilateral club feet.

00:21:28.799 --> 00:21:32.960
So club foot, if you don't know, basically it's like a golf club.

00:21:33.119 --> 00:21:38.640
You have the straight leg, but then at the ankle, the foot is turned in or upward.

00:21:38.880 --> 00:21:40.079
Every case is different.

00:21:40.240 --> 00:21:41.759
So we didn't really know.

00:21:42.720 --> 00:21:49.680
At that point, we were told you can either choose to sort of Google it and look into it or not.

00:21:49.920 --> 00:21:52.720
And I remember Mike started uh looking into it.

00:21:52.960 --> 00:21:59.200
Um, week one of Lucas's birth, had an amazing pregnancy, worked out the entire time.

00:21:59.599 --> 00:22:04.640
Um, I was induced at 41 weeks, ended up having a C-section.

00:22:05.759 --> 00:22:13.839
And week one, I remember we started going to what was then Miami Children's, is now Nicholas Children's, and we started casting right away.

00:22:14.160 --> 00:22:26.160
So Lucas was going to go under a Ponsetti treatment, which is three months of casting, the entire leg at a 90-degree angle.

00:22:26.240 --> 00:22:32.079
It's bent, where every week they sort of massage and manipulate the foot to just go outward.

00:22:32.240 --> 00:22:44.480
The upward, the dorsiflexion wasn't until he had the tenotomy, which is uh an incision of the Achilles tendon, so that it's actually stretched, and then you get that dorsiflexion.

00:22:44.799 --> 00:23:04.160
So, like Lucas said, like Mike said, Lucas being Lucas, um the casting was it was just awful between him having like stomach issues and dirtying the casts or the the rotting of the of the skin in the casts, it was just atrocious.

00:23:05.279 --> 00:23:16.079
It got to a point where we would go on the weekends to the ER and just have them, you know, take them off so that we can take him to the beach or something to just enjoy him out of the casts.

00:23:16.160 --> 00:23:23.279
So it was a bit stressful, but we decided to do an invasive surgery at the end of all that.

00:23:23.519 --> 00:23:27.920
And the day before the surgery, I remember Mike was like, I canceled the surgery.

00:23:28.079 --> 00:23:28.880
What are you talking about?

00:23:28.960 --> 00:23:30.000
You canceled the surgery.

00:23:30.160 --> 00:23:31.359
I was about to lose my mind.

00:23:31.519 --> 00:23:34.400
He's like, I did my research last night.

00:23:34.559 --> 00:23:36.400
We're not gonna operate Lucas.

00:23:37.200 --> 00:23:46.319
There is a limb-lengthening clubfoot specialist in Baltimore at Mount Sinai Hospital, and we're gonna go and visit him.

00:23:46.720 --> 00:23:48.640
Next thing you know, we're on a flight.

00:23:48.880 --> 00:23:54.160
We went to visit this amazing doctor, and we started the process all over again.

00:23:54.319 --> 00:24:02.079
I was able to um move over to Baltimore with Lucas, and I stayed there with him during the winter months.

00:24:02.160 --> 00:24:03.359
It was quite fun.

00:24:03.599 --> 00:24:05.599
And uh we started all over again.

00:24:05.839 --> 00:24:12.480
And the casting began, the tenotomy was was performed, and then he got into what's called boots and bars.

00:24:12.720 --> 00:24:29.039
And so for 23 hours, Lucas had to be in like these brick and stock hard-soled uh sandals that had like a bar that you would manipulate both the bar and the way the the sandals are are fit, and he was in that for a long time.

00:24:29.839 --> 00:25:06.240
But um if it wasn't asthma with the pulmonologist or orthopedic or physical therapy, allergy immunology, infectious disease, I mean, like Mike stated, there were maybe 10 specialists that I, you know, would visit with Lucas, and not one of them, and I do want to say I'm not blaming anybody, but not one of them said, Hey, all of these sort of like physical features, and some of them were very pronounced.

00:25:06.319 --> 00:25:08.880
I mean, we were told club foot, what causes it?

00:25:08.960 --> 00:25:09.759
It's a fluke.

00:25:09.920 --> 00:25:14.319
People would ask me, Oh, is it because there's not enough space in your uterus?

00:25:14.480 --> 00:25:16.480
I'm like, no, it's just it's a fluke.

00:25:16.559 --> 00:25:17.680
It's something that happened.

00:25:17.839 --> 00:25:23.200
And I think now would be a good time to mention that Lucas did have genetic testing in 2011.

00:25:23.759 --> 00:25:36.960
Um, but because Loise Deets was sort of come across or invented, if you will, for lack of a better word, in 2005, the box wasn't checked when the orders were written.

00:25:37.200 --> 00:25:47.839
So at that point, when we did genetic testing, since it wasn't checked, it wasn't tested, and so we didn't know until post-mortem.

00:25:48.880 --> 00:25:49.359
Yeah.

00:25:49.759 --> 00:25:56.640
And even the medical examiner, Mike, I remember, called us and said, I mean, I'm not a doctor.

00:25:56.799 --> 00:26:04.240
I'm going in with a 15-year-old on a table and just seeing Lucas, I can tell you that I'm concerned about Marfin.

00:26:04.799 --> 00:26:10.480
And when we spoke to the pediatrician about it, she called the next day and said, Look, I haven't been able to sleep.

00:26:10.640 --> 00:26:14.400
Please call them back and see if they could also check for Lois Dietz.

00:26:14.480 --> 00:26:19.359
I came across this Lois Dietz, and I think maybe Lucas fits the bill for that too.

00:26:19.440 --> 00:26:24.079
So please, in testing, add the Lois Dietz, and that's how we got the Lois Dietz.

00:26:24.400 --> 00:26:27.440
Yeah, that's how we ended up in in that one.

00:26:27.680 --> 00:26:38.960
And going, you know, looking back at all of Lucas, even when Lucas would catch a cold now in his later stage, or or he'd have a weird bump on his cheek or something, whatever.

00:26:39.119 --> 00:26:43.279
We'd be like, oh, Lucas being Lucas, because Lucas always had something.

00:26:43.440 --> 00:26:51.920
Um, I don't remember how old he was already a teenager, but he had a a little bone, a bone chip just floating around his knee, and he used to play with it.

00:26:52.160 --> 00:26:54.960
And it was the size of a quarter, and I'm like, dude, leave it alone.

00:26:55.039 --> 00:27:00.559
And he's like, No, but sometimes it it causes me pain because I can't bend my knee, but then I lose it, but then I find it.

00:27:00.640 --> 00:27:08.559
But then we went to We went to Joe DiMaggio and found a specialist that cream of the crop.

00:27:08.960 --> 00:27:11.440
And then they did a, you know, why did this happen?

00:27:11.519 --> 00:27:15.359
Oh, maybe his gait, maybe there was some trauma, you know, tata, we call him tata.

00:27:15.599 --> 00:27:15.920
Do you remember?

00:27:16.319 --> 00:27:17.039
No, I don't remember.

00:27:17.119 --> 00:27:18.720
I played basketball, I don't remember being hurt.

00:27:18.799 --> 00:27:23.920
Like there was no like significant injury that, oh, look, I, you know, I twisted my knee and here's his bone.

00:27:24.559 --> 00:27:30.319
So when you look at that, you think, okay, this is just another weird thing with Lucas.

00:27:30.480 --> 00:27:32.240
Of course, let's go in there, let's find it.

00:27:32.400 --> 00:27:33.519
Exploratory surgery.

00:27:33.599 --> 00:27:36.640
At first they didn't find it, but then they ended up finding it, right?

00:27:37.680 --> 00:27:53.440
So um when you look back at it now, you're like, we treated, we and his practitioners treated all of these like individual cases, not recognizing that they're all related because of this genetic mutation that he had, right?

00:27:53.759 --> 00:28:00.079
And nobody was able to put the pieces together and bring it to either their attention or our attention, right?

00:28:00.160 --> 00:28:12.720
I'm looking, you know, I'm a first responder, I'm a paramedic, and our job in the field is not to diagnose, but to create some sort of differential and and treat the patient for the symptoms they have and rush them to the hospital, right?

00:28:12.799 --> 00:28:18.720
So um when when we do get it right, where which is most of the time we do get it right, we're excited about it, we're happy about it.

00:28:18.880 --> 00:28:32.880
So I we're not, you know, like Jan said, we're not blaming anybody, but this needs to be made the people need to be made aware that these conditions exist and they're incredibly rare.

00:28:33.039 --> 00:28:36.240
Like Jan said, uh Louise Dietz wasn't actually labeled by Dr.

00:28:36.319 --> 00:28:39.279
Louise and Dietz, which you met at the at the foundation committee.

00:28:39.759 --> 00:28:39.920
Dr.

00:28:40.000 --> 00:28:41.200
Dietz was there at a conference.

00:28:41.680 --> 00:28:42.400
She met him.

00:28:42.559 --> 00:28:54.400
Um, so it's relatively new, but you know, now spreading awareness of like these things happen is we wish we would have had this, you know, this communication from somebody.

00:28:54.480 --> 00:28:56.960
So it is clearly frustrating.

00:28:58.000 --> 00:28:58.559
For sure.

00:28:58.720 --> 00:28:59.359
I don't know.

00:28:59.519 --> 00:29:10.000
Just really quick before we continue, I just wanted to for the folks who are are are listening, if they haven't already done the Google search about connective tissue disorders.

00:29:10.160 --> 00:29:18.559
Uh connective tissue disorders are a group of conditions affecting the tissues that support and connect other body parts like collagen and elastin.

00:29:18.720 --> 00:29:27.359
Symptoms vary widely, including joint pain, skin changes, and fatigue, and can impact organs like the heart, lungs, and kidneys.

00:29:27.599 --> 00:29:34.079
Uh it's it's uh it's it's frustrating to hear the the story.

00:29:34.880 --> 00:29:58.880
Uh and this is nothing against uh uh any specific medical practitioner, but in a way for me, especially being a registered dietitian and working with patients who may have have different conditions and all of that, excuse me, it's um it's almost like a uh a failure of the system as a whole, uh, which is definitely frustrating to to hear.

00:29:59.119 --> 00:30:08.319
Uh but I I want to ask you guys the question what if you did know?

00:30:10.000 --> 00:30:11.519
Like then what?

00:30:12.559 --> 00:30:19.200
I've thought about that every single second of the day for the last seven months.

00:30:20.480 --> 00:30:31.440
And I can tell you that had I known, actually, my husband and I were just talking about this last night over dinner, is Lucas would have lived such a different life.

00:30:31.680 --> 00:30:42.319
Lucas was crazy, hyper impulsive, did not fear anything.

00:30:42.720 --> 00:30:47.359
You don't know how many times I would lie in bed with Lucas when he was little.

00:30:47.519 --> 00:30:52.240
We would read a book, pray, and then it was okay, flacco, go to sleep.

00:30:52.400 --> 00:30:53.839
What do you mean it's like party time?

00:30:54.000 --> 00:30:58.400
And he would nosedive into the headboard multiple times a month.

00:30:58.559 --> 00:31:01.920
I mean, just backflips, front flips.

00:31:02.400 --> 00:31:04.400
There was no stopping Lucas.

00:31:06.160 --> 00:31:09.279
He was the life of the party.

00:31:09.680 --> 00:31:11.599
He was teaching the boys.

00:31:11.759 --> 00:31:17.119
I remember at the end of last year's um swim season how to do backflips in the corner of the pool.

00:31:17.200 --> 00:31:18.079
And I had to like walk over.

00:31:18.160 --> 00:31:19.039
I'm like, what are you doing?

00:31:19.119 --> 00:31:19.839
No, I want to teach.

00:31:20.160 --> 00:31:21.519
Lucas, are you kidding me right now?

00:31:21.680 --> 00:31:25.200
Like, have you thought about the fact that someone could like crack their head open?

00:31:25.279 --> 00:31:35.359
I mean, that was Lucas, cliff jumping, parasailing, 5K open water swim two summers ago in in Turks and Caicos.

00:31:35.440 --> 00:31:42.480
I mean, the kid had the most amazing energetic vibe to him.

00:31:43.440 --> 00:31:53.359
And just the thought of having been diagnosed whenever, and the thought of of his life completely changing.

00:31:53.440 --> 00:32:05.200
I mean, we know of Louis Dietz diagnosed patients who, and they'll tell you, I mean, I have a very sedative life because I have to.

00:32:05.440 --> 00:32:15.680
So instead of playing ball of any kind, I have to do arts and craft or study or just us, and that's just not who Lucas was.

00:32:15.839 --> 00:32:21.200
That's not so I will bring in the sort of spiritual aspect here.

00:32:21.359 --> 00:32:27.599
I thank God every single day for the life that Lucas led, the most amazing, blessed life.

00:32:27.839 --> 00:32:33.359
He never knew sadness, he never knew pain, he never knew despair.

00:32:33.599 --> 00:32:40.480
I mean, just recently I was giving some of his like book bags and uniforms away, and people were laughing at me.

00:32:40.559 --> 00:32:42.160
Like, Janette, 27 ties.

00:32:42.319 --> 00:32:43.440
I mean, my son has two.

00:32:43.519 --> 00:32:45.039
I'm like, yeah, 27 ties.

00:32:45.279 --> 00:32:46.480
Three three book bags?

00:32:46.640 --> 00:32:47.680
Yeah, what's the problem?

00:32:47.839 --> 00:32:50.079
I mean, and that was Lucas's life.

00:32:50.319 --> 00:32:53.200
We made sure that that it was Disney World.

00:32:53.759 --> 00:32:54.319
You know?

00:32:55.119 --> 00:32:55.519
Yeah.

00:32:55.759 --> 00:33:00.400
Um to answer your question on my side, I think Jan will agree with this.

00:33:00.559 --> 00:33:11.200
The only thing that Janet and I ever thought of was um the way that she raised her son and the way that I raised my son, right?

00:33:11.440 --> 00:33:20.319
And what I failed to recognize sometimes, and sometimes I was more understanding than others, is that she's a mom and moms treat their boys differently.

00:33:20.400 --> 00:33:28.480
I mean, my mom, uh they, you know, when I was a kid, my sisters all hated me because I got away with everything because I was the youngest of four and I was the only boy.

00:33:28.640 --> 00:33:31.440
So my mom adored me and she had me later in life.

00:33:31.759 --> 00:33:39.359
So um I'm getting to the point that Jan, I think she mentioned it earlier, so I'm gonna just piggyback off of it.

00:33:39.519 --> 00:33:42.079
Jan was a helicopter mom.

00:33:42.480 --> 00:33:44.400
She was incredibly protective.

00:33:44.640 --> 00:33:47.839
Um she lived for Lucas, lived.

00:33:47.920 --> 00:33:50.160
Um I yeah, I know every mom does.

00:33:50.319 --> 00:33:50.799
No, no, no.

00:33:51.359 --> 00:33:56.319
If people that know Jan understand that she lived for Lucas, I would tell her, get a hobby.

00:33:56.400 --> 00:33:58.720
Like, dude, give the kid some air.

00:33:58.799 --> 00:34:01.279
Like he's 15, let him breathe.

00:34:02.559 --> 00:34:05.680
If we would have known, I would have fostered that.

00:34:05.920 --> 00:34:13.119
If we would have known that Lucas had this deadly condition, I wouldn't have fought against that.

00:34:13.280 --> 00:34:16.960
I would have wrapped him up in bubble wrap just like she would have.

00:34:17.039 --> 00:34:18.400
I would have not let him play.

00:34:18.480 --> 00:34:28.480
I and and this, I'm not fear-mongering and I'm not trying to scare anybody that does have children, because we probably will pick up an audience of families that are living with us, somebody that has connective tissue disorders.

00:34:28.880 --> 00:34:31.440
Obviously, follow your treatment protocol.

00:34:31.679 --> 00:34:37.199
I'm just telling you how we would have been is I would have not allowed to play sports.

00:34:37.280 --> 00:34:55.280
You know, when when again, obviously not medical advice, but when somebody has a connective tissue disorder, they get put on a certain protocol, depending on what type of gene they have, what which condition they have, the tendency to have complications with the aorta happens either earlier in life or later in life, right?

00:34:55.440 --> 00:35:01.360
The team the treatment plan with with that those physicians and that team starts dictating where, right?

00:35:01.440 --> 00:35:08.400
So I know I know of a child that has uh Louise Dietz in Louisville, Kentucky that plays baseball.

00:35:08.559 --> 00:35:12.159
He's, I believe, 11 years old, so he's playing baseball, but he can't play football, right?

00:35:12.239 --> 00:35:14.079
So there's different protocols that they do.

00:35:15.360 --> 00:35:23.920
We uh I I would have never wanted to feel that I contributed to any of Lucas's health issues.

00:35:24.079 --> 00:35:26.079
So I would have said, okay, what are we doing?

00:35:26.159 --> 00:35:29.039
We're locking him up in a room with a violin, let's do that, right?

00:35:29.280 --> 00:35:35.760
And it would have completely altered Lucas's life and what he was, because she is right, he was electric.

00:35:35.920 --> 00:35:41.440
I took him to a Travis Scott concert, and I maybe know two songs from Travis Scott.

00:35:42.480 --> 00:35:52.320
But my joy came from watching my 15-year-old son jump up and down and sing every lyric, recording himself on the phone, like screaming.

00:35:52.480 --> 00:35:56.559
I'm like, dude, just go down there and perform because this is your concert.

00:35:56.960 --> 00:35:59.920
And then he went to the Rolling Loud concert and the same thing.

00:36:00.079 --> 00:36:06.880
So those, those depending on where you're at in your in your condition, in your lifespan, you gotta watch for blood pressure.

00:36:07.039 --> 00:36:11.119
You can't, you know, raise your heart rate, um, you can't play contact sports.

00:36:11.519 --> 00:36:14.880
And anybody that plays water polo knows that it is a contact sport.

00:36:15.280 --> 00:36:17.599
Um, we wouldn't have let him do all those things.

00:36:17.679 --> 00:36:19.760
So his life would have been completely altered.

00:36:19.840 --> 00:36:26.559
And I think that, and again, negotiating with God, um that we didn't know for a reason.

00:36:26.960 --> 00:36:35.280
So has you said you would have if you knew you would have changed your parenting style with with Lucas.

00:36:36.320 --> 00:36:39.599
Have you noticed your parenting style change with Nash and Kalia?

00:36:47.039 --> 00:36:59.840
So I try not I try not to let it affect the way that I was raising Lucas because I was because you know, we me and Jess would talk about this all the time.

00:36:59.920 --> 00:37:07.760
Man, Jan is so on top of him and so like lovey dubby and and coddles him with that that now I gotta swing the pendulum the other day.

00:37:07.840 --> 00:37:19.920
And if I want to lay in the in the bed, yeah, with my 15-year-old, if I want to lay in the bed with my 15-year-old and rub his hair and just watch a movie with him, sometimes I talk myself out of it because I gotta be the tough dad and stuff though, right?

00:37:20.000 --> 00:37:22.400
So with Lucas, I wasn't tough.

00:37:22.800 --> 00:37:29.599
Tough it kind of gets maybe is the the the wrong, but I was grooming him to be a man.

00:37:29.840 --> 00:37:30.719
I was very loving.

00:37:30.800 --> 00:37:33.280
I would always rub him on the chest when we would drive.

00:37:33.360 --> 00:37:37.199
I was always play with his hair, I was very loving, but I was tough with him.

00:37:37.679 --> 00:37:43.440
And um, there's days that that uh let me stick to the question here.

00:37:43.599 --> 00:37:55.920
So the way that I raise Nash is the the same way that I'm raised that I raised Lucas, but obviously my emotional status is different now.

00:37:56.800 --> 00:38:05.039
So in my practices, I would say I'm the same with Nash and Kalia, raising them to be independent.

00:38:05.280 --> 00:38:10.480
But on the emotional side, and Jess has picked up with this, and Jess is also guilty of this as well.

00:38:11.519 --> 00:38:20.079
I'm a little bit softer and I'm a little bit more forgiving, and I'm a little bit understanding because my whole perspective in life as a whole has changed.

00:38:20.320 --> 00:38:26.480
You know, there's this there's a very J Jan has dealt with this.

00:38:27.840 --> 00:38:28.960
I gotta give her credit.

00:38:29.760 --> 00:38:34.960
I think in a little bit better than I have, but there's clearly a very dark side to this, right?

00:38:35.039 --> 00:38:40.880
Like we have been exposed to the worst possible thing that could happen to any parent.

00:38:41.199 --> 00:38:46.800
And it it's not even it, it is it's it's above on my my own death, right?

00:38:46.880 --> 00:38:50.719
Like obviously I would I should be the one in his place.

00:38:51.280 --> 00:38:54.239
But having that exposed has changed my whole perspective in life.

00:38:54.320 --> 00:38:59.199
What I used to care about before, I don't give a rat's ass about I shouldn't cuss on this.

00:38:59.280 --> 00:39:07.360
I I don't I don't care about anymore the complaints, the the tardiness, the bills, none of that means anything to me anymore.

00:39:07.519 --> 00:39:11.360
My whole perspective, you know, people being rude, it's my whole life has changed.

00:39:11.519 --> 00:39:15.760
So when I look at Nash, I always think like big picture stuff.

00:39:15.920 --> 00:39:17.280
Like, is he healthy?

00:39:17.440 --> 00:39:18.320
Is he happy?

00:39:18.559 --> 00:39:20.639
Does he have anything of concern?

00:39:20.960 --> 00:39:21.280
No?

00:39:21.599 --> 00:39:22.400
Okay, got it.

00:39:22.559 --> 00:39:24.159
Then let's just move forward.

00:39:24.480 --> 00:39:32.800
So the love that I have had for Lucas is now being channeled through me onto the two little ones.

00:39:33.119 --> 00:39:39.360
So to answer your question, I'm clearly a different person than I am than I was seven months ago.

00:39:41.599 --> 00:39:52.159
Now I um I'm curious to hear a little bit about it, uh, and I kind of want to share my story of it.

00:39:52.400 --> 00:39:55.199
Um March twenty-eighth.

00:39:56.639 --> 00:39:58.960
Um I was out of town.

00:40:00.400 --> 00:40:32.880
And like in no way am I trying to make this about me or anything, but the things that came to my head were like a few friends.

00:40:47.840 --> 00:40:49.679
Oh, as soon as I finish the workout.

00:40:54.800 --> 00:41:01.519
Uh little plug for I'll give him a call when I finish the workout.

00:41:01.679 --> 00:41:02.800
I finished the workout.

00:41:02.960 --> 00:41:07.119
I walk outside and I was working out with two friends of mine, Big Red and Brooke.

00:41:07.280 --> 00:41:10.079
They had gone up to to go visit Kirsten with me.

00:41:10.480 --> 00:41:15.360
And then as I as soon as I walk out of the gym, Jay is calling me again.

00:41:15.599 --> 00:41:17.840
And I'm like, hey, what's happening?

00:41:18.079 --> 00:41:23.199
So he was like, A E, and he was like very serious, you know, kind of sad.

00:41:23.440 --> 00:41:25.119
And he was like, Yeah, I don't know if you heard.

00:41:25.280 --> 00:41:26.960
Uh, and I was like, No, what are you talking about?

00:41:27.039 --> 00:41:29.440
And he's like, Yeah, man, uh Lucas.

00:41:29.760 --> 00:41:31.280
Like, he said, Lucas pass.

00:41:31.599 --> 00:41:37.679
And I was like, We have a member named Lucas, and that was the first one that came to mind.

00:41:37.840 --> 00:41:39.760
Um, I think for obvious reasons.

00:41:39.920 --> 00:41:42.559
Why on earth would I think Lucas Osina?

00:41:42.960 --> 00:41:47.280
Uh and then he I was like, Lucas, like from the the member from the gym.

00:41:47.440 --> 00:41:50.000
He was like, and I'm I'm glad that he didn't pass it.

00:41:50.639 --> 00:41:51.280
You know.

00:41:52.960 --> 00:42:02.159
But then he said Mike Yukas, and I was like, like I just like stopped.

00:42:02.800 --> 00:42:04.079
I had chills.

00:42:05.280 --> 00:42:12.800
Like I started crying and I just I I couldn't believe it.

00:42:13.119 --> 00:42:37.920
Uh and then uh there was like I uh when when more people started I guess hearing about it, uh and people know that m Mike and I are are close, they would they started contacting me, so I started getting and I'm sure you had a million things too.

00:42:38.079 --> 00:42:40.880
Um but again just kind of sharing from my side.

00:42:41.039 --> 00:42:53.679
I I started receiving messages on Instagram and excuse me, uh text messages, phone calls, and I even have a list of on my notes of people who reached out because I really appreciated that.

00:42:53.840 --> 00:43:11.039
And eventually I wanted to tell it to you to let you know that like X, Y, and Z people reached out, and um but there was also a a slightly frustrating part, and this is nothing on those people who asked the questions.

00:43:11.360 --> 00:43:18.880
People were asking like what happened, and I was kind of like to me, it was like, Why would you even ask me that right now?

00:43:19.360 --> 00:43:29.039
Um so it was just a it was a weird thing, but uh it was it was kind of crazy, right?

00:43:29.119 --> 00:43:39.679
Like being away and like trying to be there for my girlfriend who it was in the season and and all of that, then I'm like fielding the the text and the questions and and all those sorts of things.

00:43:40.000 --> 00:43:54.159
Um but that day and whenever I do the thing in the gym, and if I explain the story, because like I said, I don't always explain it, but when I do, I'll talk about March 28th and two weeks before 2016.

00:43:54.400 --> 00:43:56.480
I want people to like understand that part.

00:43:56.800 --> 00:44:04.320
Um oh and a quick side note, Jen, when you were explaining Lucas, he's also a like a smart kid.

00:44:04.480 --> 00:44:08.719
Like he very intelligent, like outside of his energy and all that, very intelligent.

00:44:08.880 --> 00:44:10.320
Um but anyway, that's a side note.

00:44:10.480 --> 00:44:20.079
So on on the the the day of that was kind of like my like roundabout way of of slightly explaining my story.

00:44:20.320 --> 00:44:33.679
Um but and I I'd be curious to hear Rob's story, Jan's mic, like I don't know if you guys want to give a brief talk about it.

00:44:33.920 --> 00:45:06.960
Uh Jen, do you want to so I have been able to speak with or meet people in the last seven months that have given me their version of that day, and it's been very interesting to not only meet and speak to them about their version, but also all of the ways that they've honored Lucas in the last seven months.

00:45:07.199 --> 00:45:12.639
And I almost feel guilty that I haven't been able to personally thank so many people.

00:45:12.880 --> 00:45:18.320
I'm big on thank yous or I appreciate you cards, you know, little gifts.

00:45:18.480 --> 00:45:32.480
So um, those moments of silences, you know, I've I've heard that they've been that they've been happening before swim-offs or or or they'll blow the whistle right after swim-offs.

00:45:32.559 --> 00:45:33.360
So it's like a shocker.

00:45:33.440 --> 00:45:47.840
Like, why is the ref stopping the and they they stop and they say, you know, moment of silence for so um I also want to preface the on that day with something that that I've also learned.

00:45:49.280 --> 00:46:02.800
I've met several amazing moms that have since that day through friends of friends, like reached out, and now I get it.

00:46:02.960 --> 00:46:08.159
Where before I was like, who are these women and why do they want to talk to me because they lost a child?

00:46:08.239 --> 00:46:09.599
But now I get it.

00:46:09.920 --> 00:46:12.239
Because now that's me.

00:46:12.400 --> 00:46:16.000
Now I'm the one that, oh my God, you lost your son in a diving accident.

00:46:16.159 --> 00:46:17.599
Like, please, I want to speak to you.

00:46:17.760 --> 00:46:30.719
So, Lucas and these moms that I've met, there's something so spiritual about these children, whether they're young or mid-20s.

00:46:32.320 --> 00:46:47.039
In one of the grief sessions that I attended, another hobby of mine, they say that there's something spiritual about these people almost knowing on a supernatural level that they're gonna pass.

00:46:47.119 --> 00:46:49.039
Like they're literally prepping.

00:46:49.119 --> 00:46:52.639
Like it's I think there's a book that's called like the five nudges.

00:46:52.880 --> 00:47:01.039
It's almost like they nudge the family members and or friends, or and they sort of have, and that's what happened with Lucas.

00:47:01.360 --> 00:47:12.880
I mean, I won't get into it in detail, but Lucas literally had beautiful moments with immediate family members that I'm so thankful for.

00:47:13.360 --> 00:47:15.679
And that day was was that way.

00:47:15.840 --> 00:47:22.000
There were just so many coincidences that are not coincidences because it's God that they're God incidences.

00:47:24.880 --> 00:47:27.840
I was on spring break because I teach at a public school.

00:47:28.079 --> 00:47:32.159
Lucas's school has Easter break, so they're different.

00:47:32.320 --> 00:47:40.480
I'd come from home from Atlanta um three days, you know, at the end of the week, Wednesday, Thursday, Friday.

00:47:40.719 --> 00:47:42.000
I had Lucas.

00:47:43.840 --> 00:47:48.639
And Thursday night, he told me there's a game, there's a tournament.

00:47:48.800 --> 00:47:50.639
I'm not on the list, but I want to go.

00:47:50.800 --> 00:47:54.880
And I told him, Flacco, please, I don't want you to miss school, you know.

00:47:57.199 --> 00:48:02.320
I think maybe he asked two more times and eventually, like always, I gave in.

00:48:02.639 --> 00:48:04.000
So I said, but it's on you.

00:48:04.079 --> 00:48:07.039
You text the coach and you see if if you can get on the list.

00:48:07.199 --> 00:48:10.719
Mind you, the list is 21 people long.

00:48:10.800 --> 00:48:11.440
I mean, long.

00:48:11.599 --> 00:48:13.840
There's no reason why to add a 22nd.

00:48:14.079 --> 00:48:18.079
But the coach was kind enough to reply to Lucas, put him on the list.

00:48:18.159 --> 00:48:19.840
Here he goes, number 22.

00:48:20.079 --> 00:48:25.280
Woke him up in the morning, gave him a massive breakfast, like always, dropped him off at school.

00:48:25.599 --> 00:48:30.400
And maybe two months prior, Lucas had started when I would drop him off.

00:48:30.480 --> 00:48:31.760
He'd tell me, I love you, mom.

00:48:32.079 --> 00:48:34.239
Drive carefully, don't text and drive.

00:48:34.480 --> 00:48:36.559
And I'll never forget the first time he told me that.

00:48:36.639 --> 00:48:38.639
It was like, Who are you?

00:48:39.039 --> 00:48:42.880
Like, are you actually telling me that you love me and to be careful driving?

00:48:43.119 --> 00:48:46.239
So dropped him off at school.

00:48:46.400 --> 00:48:47.920
I'll see you later.

00:48:48.320 --> 00:48:54.880
Went to run an errand, went back home to get, of course, you know, his food and his chocolate milk and whatnot.

00:48:55.199 --> 00:48:57.280
Got to the tournament at ransom.

00:48:57.519 --> 00:49:00.960
I remember making eye contact with him, went up to the stands.

00:49:01.679 --> 00:49:04.559
Um he didn't play.

00:49:04.880 --> 00:49:08.559
The boys were playing against Columbus.

00:49:09.039 --> 00:49:11.679
For some reason, they were losing.

00:49:11.840 --> 00:49:13.599
They weren't supposed to lose.

00:49:13.840 --> 00:49:16.320
And I remember Lucas didn't even touch the water.

00:49:16.480 --> 00:49:19.679
So it's not like he was playing for the tournament.

00:49:19.760 --> 00:49:21.039
He wasn't playing.

00:49:22.239 --> 00:49:30.800
When the tournament ended, the coach told the boys, one lap and we'll debrief, you know, sort of like cool down.

00:49:31.360 --> 00:49:37.840
So he was walking with a few of his friends, and I remember, you know, in true Lucas fashion, shoving, joking.

00:49:38.079 --> 00:49:40.559
He was he was just himself.

00:49:42.400 --> 00:49:44.400
The boys jumped in.

00:49:45.760 --> 00:49:47.920
Lucas must have jumped in.

00:49:48.320 --> 00:49:54.960
And I remember thinking to myself, I'm gonna go down so he can have his chocolate milk before he goes back to school.

00:49:55.119 --> 00:49:59.840
And then sort of like thinking, no, don't, you know, just don't be that mom.

00:50:00.800 --> 00:50:06.400
And someone immediately said, one of our players fainted.

00:50:06.960 --> 00:50:12.079
So I grabbed my bag and I started walking down the steps.

00:50:12.400 --> 00:50:14.480
Then I hear it's Lucas.

00:50:14.960 --> 00:50:19.519
And just like he was saying, you know, I'm happy Lucas, you know, our member, nothing happened.

00:50:19.599 --> 00:50:23.440
I remember saying, Please God, don't let it be my Lucas.

00:50:26.400 --> 00:50:31.760
Then someone said something else, and then they said it's Osuna.

00:50:32.800 --> 00:50:36.880
And that's when I started sort of like booking to the end of the pool.

00:50:37.119 --> 00:50:42.480
I I do remember like looking up at the stands because there were many schools there.

00:50:42.800 --> 00:50:49.920
I don't know, you know, how they were sent to the gym, but from what I heard, all the kids were sent to the gym.

00:50:50.239 --> 00:51:08.400
And I do want to say that I found out later that the first person to pull Lucas out of the pool and ask for the AED machine is my brother-in-law's first cousin, Megan, who's the athletic director at Ransom High School.

00:51:09.199 --> 00:51:12.880
I was able to speak with her at length after.

00:51:14.000 --> 00:51:19.920
The second person to help Megan was an anesthesiologist at Mercy Hospital.

00:51:20.159 --> 00:51:27.280
I was able to see her at a Gulliver water polo tournament a couple weeks after and thank her and get her story.

00:51:27.599 --> 00:51:36.079
And the third person to help Lucas that day was an off-duty firefighter who I later spoke to and thanked and got his version of the story.

00:51:36.159 --> 00:51:43.039
And all three of those people told me, Jeanette, there was absolutely no pulse.

00:51:43.840 --> 00:51:45.119
No water in his mouth.

00:51:45.280 --> 00:51:46.400
No, there was no pulse.

00:51:46.559 --> 00:51:51.199
The AED machine didn't read any sort of vitals.

00:51:51.280 --> 00:51:52.320
And so we were confused.

00:51:52.400 --> 00:51:53.920
We didn't know what to do.

00:51:55.760 --> 00:51:58.639
So the fire station eventually got there.

00:51:58.719 --> 00:52:01.039
It seemed like forever, I'm sure it wasn't.

00:52:01.199 --> 00:52:07.280
I know one of the boys ran out in his speedo and barefoot to the street to sort of like bring them in.

00:52:07.599 --> 00:52:09.280
Austin, the goalie.

00:52:09.920 --> 00:52:13.280
And I don't know.

00:52:13.440 --> 00:52:15.760
I just remember dropping to my knees.

00:52:22.639 --> 00:52:24.400
So they worked on him.

00:52:27.679 --> 00:52:29.519
They put him on a stretcher.

00:52:30.960 --> 00:52:44.239
And for a nanosecond, my mind played tricks on me because I thought he's alive because his arms were up on this like frame.

00:52:45.199 --> 00:52:49.440
They must have been strapped though, and the the frame was just like pumping.

00:52:49.519 --> 00:52:53.920
It was like an arm that was um giving him chest compressions.

00:52:54.079 --> 00:52:57.119
So it was Ultra Music Fest.

00:52:58.159 --> 00:53:04.320
The uh driver of the rescue, I remember his hands were trembling and he was trying to make small talk.

00:53:04.400 --> 00:53:08.880
He was telling me that his son was um a student at uh at Balen.

00:53:09.840 --> 00:53:13.519
And I remember just like trying to like lean over and just ask, is he breathing?

00:53:13.599 --> 00:53:14.480
Is he okay?

00:53:14.719 --> 00:53:20.639
We were gonna go to Mercy, but I'm not sure why they changed us to Jackson.

00:53:20.800 --> 00:53:22.559
There was so much traffic.

00:53:23.599 --> 00:53:33.599
When we got to Jackson, um I just remember thinking, like, my God, he must be so cold, the kid's naked, he's like an aspedou.

00:53:34.159 --> 00:53:42.320
And um I did hear one of the firefighters say, non-responsive, we were wheeled into a room.

00:53:42.559 --> 00:53:49.840
There must have been like 17 people in the room, and the doctor was next to me and he was giving orders.

00:53:50.800 --> 00:53:54.960
And uh, I remember being on my knees and just rubbing Lucas's feet, cheering.

00:53:56.079 --> 00:53:58.079
Like if I was at a game.

00:55:06.079 --> 00:55:09.760
So he had to go through that trek of coming home.

00:55:11.199 --> 00:55:17.920
Um, Jess was one of the first people to get there when we didn't know what to do.

00:55:18.480 --> 00:55:23.039
My sister, there were so many people outside.

00:55:23.280 --> 00:55:29.440
I do want to say about that day, so many moving parts.

00:55:30.559 --> 00:55:33.199
So many different communities came together.

00:55:33.440 --> 00:55:36.880
And I remember when it was all said and done.

00:55:37.679 --> 00:55:44.559
Um, you know, I went out and I sat down in in a breezeway, and I remember right away feeling Lucas.

00:55:44.800 --> 00:55:57.679
It was like it was during Lent, and I remember the wind was just so powerful, and it was as if he was breathing for me, you know, like I'm good.

00:55:58.800 --> 00:56:00.320
Don't worry about it, mom.

00:56:02.239 --> 00:56:17.840
I do want to say before Mike um jumps in, that on behalf of the family, I visited the fire station, the people that were on shift that day that worked, Lucas, a few months after.

00:56:18.159 --> 00:56:34.960
I took them some cookies, and I really wanted to let them know that I thanked them and that I appreciated them because I'm sure that it's not the norm to, you know, get a call like that and then have a a teenager pass on on your shift.

00:56:35.199 --> 00:56:40.800
So I did want them to know that I appreciated their hard work and for taking care of Lucas the way they did.

00:56:42.719 --> 00:56:46.800
I later found out that that driver was a drowning victim.

00:56:48.719 --> 00:56:51.599
And uh, so that was really special.

00:56:51.920 --> 00:56:56.880
And a few months after that, on behalf of the family, I did go to Jackson.

00:56:57.440 --> 00:57:04.800
And uh the lead nurse, another God incidents, is a Balen mom, and she helped me make it happen.

00:57:05.119 --> 00:57:10.239
She got all the medical personnel that was there that day together.

00:57:10.400 --> 00:57:18.719
And so I visited them and on behalf of the family said thank you for for their hard work and for taking care of Lucas the way they did.

00:57:20.559 --> 00:57:26.559
And so, you know, now they're on board for the walk and and for helping in any way, shape, or form.

00:57:26.880 --> 00:57:29.360
So the silver lining to that.

00:57:30.559 --> 00:57:32.559
Gotta look for those silver linings.

00:57:32.880 --> 00:57:33.760
Yeah, always.

00:57:33.920 --> 00:57:34.880
Thanks for sharing that.

00:57:35.199 --> 00:57:35.679
Sure.

00:57:36.239 --> 00:57:47.119
Um Eric, I'll you know, I just want to talk about a little bit about the messages that you received in your story.

00:57:47.280 --> 00:57:55.119
So two people, you are the third, have told me that day and the way that they found out.

00:57:55.920 --> 00:58:11.760
And I've uh I've come to understand that uh I don't uh uh I'm not particularly interested in in hearing people's story.

00:58:13.119 --> 00:58:31.360
And it hit me when I was on a plane with a very good friend of mine, Julio, and he listened to me talk about Lucas for about two and a half hours, and we hugged and we reached out to each other and we cried and we spoke about the goods and the bads, and I let out all my frustrations on on this plane ride.

00:58:32.159 --> 00:58:36.880
And at the very end, I asked him, How did you find out?

00:58:37.199 --> 00:58:38.000
Like, how did you know?

00:58:38.239 --> 00:58:39.360
And he told me the story.

00:58:39.519 --> 00:59:01.039
And watching him cry like manly, ugly cry, just telling me him reliving that experience and saying that our friend Giggles, which was sitting across the aisle, is the one that called him and that Giggles couldn't get the words out of his mouth.

00:59:03.760 --> 00:59:12.639
Hurts me even more because I realize that the pain of Lucas leave of Lucas leaving us goes way beyond us.

00:59:14.239 --> 00:59:38.719
And if you move past inner circles to outer circles, even moms and parents and dads that are just acquaintances at Belen, they've cried, they've hurt, either because they've known Lucas or because they can put themselves in our position and feel, even if for a moment, of the pain of losing the most important thing in your life.

00:59:39.679 --> 00:59:52.480
So not to be rude to you to anybody out there that although the curiosity of me is like, how how do people find out?

00:59:52.639 --> 00:59:54.239
Did you find out because of the the radio?

00:59:54.400 --> 00:59:57.280
Did you find out because of you know the TV?

00:59:57.440 --> 00:59:58.480
Did you find out on Instagram?

01:00:00.239 --> 01:00:09.920
Listening to those stories are so, like Jan said, surreal that they're um it's almost like I I rather not know.

01:00:10.000 --> 01:00:17.440
I have 324 unread messages within that weekend, those 72 hours, that I can't even go back and listen to.

01:00:17.519 --> 01:00:24.239
And it's even now when I got to reach out to a friend of mine or something, and I go to that message to like, oh, let me reach out to Chris.

01:00:24.400 --> 01:00:31.599
And when I go to Chris, it says March 29th, and then there's this long paragraph with crying emojis and prayers and whatnot.

01:00:31.679 --> 01:00:32.320
I'm like, wow.

01:00:32.400 --> 01:00:35.760
And then I reply, I'm sorry, I never got back to this, right?

01:00:36.079 --> 01:00:38.239
So those are very difficult to listen to.

01:00:38.320 --> 01:00:40.719
Again, because there's moments that make it so real.

01:00:40.800 --> 01:00:46.559
Because still, I I could attest for Jan, and I could definitely speak for Jess because she says it probably every other day.

01:00:46.800 --> 01:00:48.400
I can't believe this is our life.

01:00:48.559 --> 01:00:54.400
Like, I can't believe that I'm not screaming at Lucas for slamming the microwave too hard and waking up his little brother.

01:00:54.480 --> 01:01:01.440
I can't believe that you know I don't hear him laughing with his friends playing um Rainbow Siege 6 in his room.

01:01:01.760 --> 01:01:05.840
So um I'll I'll be brief about my story.

01:01:05.920 --> 01:01:10.639
Unfortunately, and and and I do want to say what Jan was talking about, the the nudges.

01:01:11.039 --> 01:01:18.559
A week and a I'm sorry, a week and a half prior, Jan and I got into an argument, and Lucas was present over the phone.

01:01:18.639 --> 01:01:21.039
So it was an argument over the phone, and Lucas was present.

01:01:21.280 --> 01:01:28.000
And that night he went, he was dropped off at my house, had a long conversation with Jess, and Jess texted me.

01:01:28.079 --> 01:01:30.800
She was like, you probably should call Lucas on this one.

01:01:31.119 --> 01:01:36.639
And um, I had a long, heartfelt conversation with Lucas.

01:01:36.800 --> 01:01:50.880
I I presented to him that I was I was probably somewhat wrong at that moment, but I think that I've been somewhat wrong in the way that I've tried to manage Jan and I relationship, right?

01:01:51.039 --> 01:01:56.719
And you can't change somebody, you can only change your perspective on or any particular moment.

01:01:56.880 --> 01:02:02.639
So I said to him, I had an epiphany, let's let's treat this differently.

01:02:02.880 --> 01:02:08.960
And I won't get into details, but we ended up having a very loving, heartfelt conversation.

01:02:09.280 --> 01:02:15.360
And at the end of that conversation, it was like, All right, Tata, get to bed, you have school, um, I love you, whatever, I'll taught you tomorrow.

01:02:15.599 --> 01:02:17.920
And we said our goodbyes on the phone.

01:02:18.159 --> 01:02:22.559
And on the way to my my bunk, because I was at the firehouse on my way to my bunk, I get a text message.

01:02:22.960 --> 01:02:25.760
Rant late at night, it was already past 11.

01:02:25.920 --> 01:02:28.000
And I look, and it was Lucas.

01:02:28.079 --> 01:02:38.480
And it was just a simple, heartfelt, which I posted on my Instagram, um saying, I'm so lucky to have the smartest, most experienced man alive.

01:02:38.639 --> 01:02:39.360
I love you, Baba.

01:02:39.840 --> 01:02:48.000
And it was one of those nudges like him, like a text message that I've screenshotted probably 50 times since then, not to lose it.

01:02:48.320 --> 01:02:52.000
Um, but that's just a testament to the way that Lucas was.

01:02:52.079 --> 01:03:07.440
And I believe that that is um, you know, when we speak to our our religious leaders, for lack of a better term, you know, Father Whaley and my pastor, and and anybody says that was Lucas, you know, sending you a message and letting you know like it's okay, type of thing.

01:03:07.760 --> 01:03:13.199
So um I was on shift the night before.

01:03:13.440 --> 01:03:17.760
I've tried to make it a point that I am not going to communicate with your mom about plans.

01:03:17.840 --> 01:03:22.880
It is your responsibility to communicate with your mom about plants, just trying to teach them accountability, responsibility.

01:03:23.119 --> 01:03:28.000
And I said, and then that night I said to him, Tata, I have a project that I'm doing with the county.

01:03:28.239 --> 01:03:30.000
I gotta go to another station.

01:03:30.159 --> 01:03:34.880
I'm not gonna make it to your nine o'clock game, but I will be there for your one o'clock game.

01:03:35.519 --> 01:03:38.639
And uh I said, tell your mom, and he doesn't reply.

01:03:38.800 --> 01:03:40.400
And I said, Hey, tell your mom.

01:03:40.480 --> 01:03:41.840
And he's like, Okay, done.

01:03:42.000 --> 01:03:44.559
Like, all right, we done it, got it.

01:03:44.960 --> 01:03:52.079
I do remember that next morning driving to the firehouse, to the other firehouse, and I have a million things going on in my brain about this project.

01:03:52.320 --> 01:03:59.519
And I do remember seeing I'm driving my wife text on our little group chat with Lucas, Tata, good luck in your game today.

01:03:59.679 --> 01:04:00.639
And he said, Thanks.

01:04:00.800 --> 01:04:04.239
And then I meant to do it, but I'm driving and I never did it.

01:04:04.800 --> 01:04:14.320
Um we were we were filming some videos, my phone was on the production table far, far away, and then it just wouldn't stop ringing, wouldn't stop ringing.

01:04:14.480 --> 01:04:18.800
And then one of the film crew guys goes, Hey Mike, this phone just doesn't stop ringing.

01:04:19.039 --> 01:04:24.079
And I look at the name and it says uh Juan, uh Aiden's dad.

01:04:24.239 --> 01:04:27.039
And I'm like, Oh, you know, it's I gotta get that, guys.

01:04:27.119 --> 01:04:27.599
I'm so sorry.

01:04:27.679 --> 01:04:36.000
So I get it real quick, and Juan is he's he's not able to compose himself to speak.

01:04:36.320 --> 01:04:42.559
And my initial instinct is something happened to Aiden and he's calling me because I'm a firefighter.

01:04:42.639 --> 01:04:48.400
It most first responders have gone through this, where something happens to a child or somebody and they call just for advice.

01:04:48.639 --> 01:04:52.480
So I'm like, okay, and I'm in my head, I'm like, breathe, Juan, breathe, breathe, breathe.

01:04:52.639 --> 01:04:58.239
And then he mentions all he can say is Lucas, Lucas, and then he says, Lucas isn't breathing.

01:04:58.320 --> 01:04:59.440
So we immediately just stopped.

01:04:59.519 --> 01:05:03.840
I start running, and I'm and I just you know, bark out, hey, I gotta go.

01:05:04.079 --> 01:05:10.480
And then my my good friend, uh Captain Adrian Florido, God bless him, he's with me doing that project.

01:05:10.559 --> 01:05:14.000
And he starts sprinting with me, just grabbing whatever he can off the cart.

01:05:14.159 --> 01:05:16.159
And he's going, Mikey, I'll drive, Mikey, I'll drive.

01:05:16.239 --> 01:05:32.320
And I'm like, No, no, no, no, no, I'm gonna drive because I knew that nobody could drive as erratic, if you will, like I was about to drive, because I'm coming from West Palm Beach all the way down to Jackson Hospital, which is gonna take an hour and a half through Tri-County traffic.

01:05:32.719 --> 01:06:16.559
Uh, to spare the long story, I fight through traffic and uh and my phone from all the updates goes radio silent for a little bit, and it could have been that silence, or it could have been just this gut feeling as a dad that I knew that they called them, and um they were nervous about calling me because they knew that I was driving, and uh and I ended up just actually I think I slowed down to idle in the middle of the traffic, just in in shock and in disbelief.

01:06:17.280 --> 01:06:33.360
I had the blessing of finding a city of Miami police officer on her way down to Miami, and I literally just cut her off and I said, My son's in cardiac arrest at Jackson Memorial.

01:06:33.679 --> 01:06:37.280
Can you give me an escort?

01:06:37.360 --> 01:06:39.280
And I don't know if they're able to do that or not.

01:06:39.440 --> 01:06:43.039
I I tried my best to remember the license plate to thank this person.

01:06:43.360 --> 01:06:49.760
Um, and they they got me all the way into Dade County, into an open lane, and and uh and I was able to get to Jackson.

01:06:49.840 --> 01:07:00.960
And and I'll again I'll spare those details, but um yeah, there was um a ton of people, a ton of people there.

01:07:01.360 --> 01:07:08.719
Uh from that were at the water polo game to folks that just started hearing the news and just started rushing towards the hospital.

01:07:09.039 --> 01:07:13.679
And uh I remember saying, I I don't want to see anybody, just get me out of here.

01:07:14.079 --> 01:07:23.119
And I do remember, and I'll go back and I'll go, I'll kind of like shift this back to the to the Louise Dietz situation.

01:07:23.440 --> 01:07:35.119
I do recall when I walked into the room with Lucas, as any of you parents could expect, I was doing or wanted to do what all of you would do, right?

01:07:36.480 --> 01:07:38.639
But they wouldn't let me shut the door.

01:07:39.119 --> 01:07:41.599
And um they were respectful.

01:07:41.679 --> 01:07:46.639
The city of Miami police officers were very respectful, the doctor, everybody was respectful, but they said, Mr.

01:07:46.880 --> 01:07:51.280
Osuna, I'm sorry, but we can't leave you alone with the body.

01:07:51.440 --> 01:07:55.440
And I'm sorry, but you can't really manipulate him that much.

01:07:55.519 --> 01:07:59.119
Like they were very they obviously the position that they're in is they they gotta say this.

01:07:59.760 --> 01:08:00.880
And I'm like, what's going on?

01:08:01.039 --> 01:08:06.559
And they said, he's a minor, we need to do an autopsy, we need to investigate.

01:08:06.719 --> 01:08:09.280
This is just protocols that need to be in place.

01:08:10.239 --> 01:08:19.680
Um, and I remember initially when they said that word, I'm like, I can't believe they're saying this about my 15-year-old son.

01:08:20.319 --> 01:08:23.039
And I know that Jan screamed out, absolutely not.

01:08:23.119 --> 01:08:24.880
And then I was like, no, no, no, we need to know.

01:08:24.960 --> 01:08:26.159
And then she kind of came to her senses.

01:08:26.319 --> 01:08:28.000
She's like, Yeah, we need to know what's going on here.

01:08:28.079 --> 01:08:42.079
And in the state of Florida, to my understanding, fact-checking on this, there's five states that require an autopsy to be done on any uh on the death of a minor to investigate what happened to that minor.

01:08:42.239 --> 01:08:47.119
Only five states, which obviously leaves us through the math, the other 45.

01:08:47.520 --> 01:09:07.600
That our logic goes to how many children, how many young adults have passed away from a connective tissue disorder that the family has elected not to do, maybe not even elected, maybe it's never even brought into their stratosphere of maybe we should do a further investigation?

01:09:07.680 --> 01:09:12.800
They just chalk it up as a heart attack when it's actually a connective tissue disorder.

01:09:12.880 --> 01:09:22.079
So the last numbers that I've heard is that there's currently up to 5,000 people diagnosed worldwide with Louis Dietz.

01:09:22.239 --> 01:09:25.039
That is nothing when you run those numbers.

01:09:25.279 --> 01:09:34.479
But how many others have passed away with an aortic dissection due to a connective tissue disorder that has never been actually diagnosed?

01:09:34.800 --> 01:09:45.119
Jan went out of her way to make sure that the death certificate was amended after the fact that it was pregnant to say Louis Dietz type 2 so that that data could be recorded.

01:09:45.760 --> 01:10:04.880
So the point that I'm making here is that maybe this is a bigger problem that we're just not fully aware of because of the lack of research and metrics that say, hey, this should be brought up like other life-threatening diseases, so that we could screen for children these days.

01:10:04.960 --> 01:10:12.000
And I and I revert I always have this coping mechanism where I revert back to the issue at hand as opposed to the emotional side.

01:10:12.239 --> 01:10:22.640
But the emotional side is what's driving the fact that we are now determined to raise awareness so that we don't, other people don't have to feel what we're feeling through.

01:10:22.880 --> 01:10:30.479
Um, you know, Jan has been absolutely I use her as our ambassador of emotions.

01:10:30.560 --> 01:10:32.880
You know, she came in today and she gave you both cards.

01:10:32.960 --> 01:10:46.399
And these are things that I didn't I didn't value much as I value now on what she was teaching Lucas on how to be a better man of saying good morning, saying please, saying thank you, giving carinhos as she calls them, to make sure that people feel appreciated.

01:10:46.720 --> 01:10:49.680
And she went to the firehouse.

01:10:50.000 --> 01:10:52.239
She asked me three or four times to go with her.

01:10:52.399 --> 01:10:57.279
I, for many reasons, I couldn't face those, I couldn't.

01:10:57.439 --> 01:10:58.479
She did a great job.

01:10:58.560 --> 01:11:00.399
She went to the hospital to Jackson.

01:11:00.479 --> 01:11:05.359
She met with the team that that is by far the worst day of their life.

01:11:05.680 --> 01:11:09.359
Bar none, uh, as a on the professional side.

01:11:09.760 --> 01:11:18.720
Running a pediatric cardiac arrest on a 15-year-old that doesn't survive is clearly the worst day of those guys' lives.

01:11:18.960 --> 01:11:24.560
I had friends of mine that were firefighters, one of them from Metro Data in particular, that he left work.

01:11:24.640 --> 01:11:27.520
He called his chief and he goes, I'm very close to the father.

01:11:27.600 --> 01:11:33.279
I'm I saw that that boy be raised in the I am CrossFit gyms.

01:11:33.600 --> 01:11:34.560
I gotta go home.

01:11:34.640 --> 01:11:35.760
And he went home.

01:11:36.000 --> 01:11:48.800
So the you know, I appreciate Jan going and representing the Osuna family to to those first responders because um, and then there's connections because I'm a firefighter and there were firefighters, so they I know who they are.

01:11:48.880 --> 01:11:50.560
They may have been members of mine at one time.

01:11:50.640 --> 01:11:55.840
One of the guys is uh a distant relative of Jess, my wife.

01:11:56.159 --> 01:12:04.000
So um, you know, I appreciate you sharing your your side, Eric, and I'm sure that everybody has their stories.

01:12:04.640 --> 01:12:15.039
Nobody has out of respect, respect, fear, nobody asked me those questions, right?

01:12:15.119 --> 01:12:18.960
Like the tough questions that everybody was wondering on social media.

01:12:19.199 --> 01:12:24.319
I jumped onto one of the local news channels that was covering the story, and I read through the comment section.

01:12:24.479 --> 01:12:29.840
And you guys know in social media, it's a cesspool, it serves a purpose, but it's a cesspool.

01:12:30.479 --> 01:12:45.760
And the comments in there after the second or third one that I heard, I just deleted it, I turned it off, and I just walked away from it because the assumptions and the comment sections from people that were legitimately concerned.

01:12:45.920 --> 01:12:46.239
Dr.

01:12:46.399 --> 01:12:47.840
Marlene Moss said it.

01:12:48.000 --> 01:13:02.079
She had to open up her second location and on the weekends from the influx of uh parents that were concerned about what happened to Lucas and what is this connective tissue disorder thing that the people are talking about.

01:13:02.319 --> 01:13:04.000
Can my son get tested?

01:13:04.319 --> 01:13:12.720
So um, you know, I understand the whirlwind that happened around that situation, and we were approached.

01:13:12.880 --> 01:13:19.439
I had, I don't I'm not gonna call the news channel because I may be wrong, but I had the news channel knocking on my door uh the day after.

01:13:19.600 --> 01:13:25.840
And I had my what I call pit bulls, my fire crew was at my house and they opened that door barking at them.

01:13:25.920 --> 01:13:28.079
And I said, guys, let me handle this real quick.

01:13:28.239 --> 01:13:30.159
And they were very respectful and very kind.

01:13:30.239 --> 01:13:32.640
And and I said, Listen, we're not ready to talk.

01:13:32.720 --> 01:13:33.680
I'm so sorry.

01:13:33.920 --> 01:13:41.359
But we did get approached by a family member that said, they're gonna run Lucas' story at 6 p.m.

01:13:41.680 --> 01:13:42.319
tonight.

01:13:43.119 --> 01:13:49.199
They're going to say whatever facts they have that could be far off from the truth.

01:13:49.439 --> 01:13:51.439
You guys may want to give a statement.

01:13:51.600 --> 01:13:53.279
And we weren't ready to give a statement.

01:13:53.359 --> 01:13:54.159
We weren't ready to talk.

01:13:54.239 --> 01:14:01.279
We didn't, we but then what was the the the opposition to that is let them just run a story and without the facts, right?

01:14:01.439 --> 01:14:14.479
And I'm not I'm not you know uh um jeopardizing or or or uh challenging the integrity of this news channel, but they didn't have the facts, and people were conjuring up stories, as you will.

01:14:14.880 --> 01:14:25.439
So uh we reached out to Mayor Francis Swarez, one of my my buddies and a mayor and a and a member of ours, and I said, Hey, can you know who could be more politically correct than you?

01:14:25.680 --> 01:14:28.159
Can you just jump on there and and say a few words for us?

01:14:28.239 --> 01:14:30.560
And this is how we're feeling, and this is what we know.

01:14:30.800 --> 01:14:38.560
And uh, and he did us the favor of being the ambassador uh for us, or the spokesman, I should say, for the family for those couple of days.

01:14:38.880 --> 01:14:55.520
But I now feel for families that their name gets they're going through the worst moments of their life, whether it's the divorce or whether it's the trauma or whether it's a loss of a of a loved one, and then having that splattered all over social media and all over the news.

01:14:55.600 --> 01:15:04.880
And all you want to do is grieve the loss of your child, and then you got to deal with all this other nonsense for a lack of a better word that has really no effect.

01:15:04.960 --> 01:15:08.479
It's just the the buzz, it's the trending news that everybody wants a part of.

01:15:08.640 --> 01:15:11.760
And it was it was really, really tough trying times for all of us.

01:15:11.840 --> 01:15:18.000
There was a lot of crazy emotions going on at the time, which lasted for quite some time.

01:15:18.560 --> 01:15:28.319
Yeah, can you can't imagine the you have to deal with that every single morning.

01:15:28.720 --> 01:15:29.039
Right.

01:15:29.279 --> 01:15:31.680
You're a firefighter, gym owner, you're organized.

01:15:31.760 --> 01:15:32.720
I know you you plan ahead.

01:15:32.880 --> 01:15:34.640
Jeanette, you're a pre-preschool teacher.

01:15:34.800 --> 01:15:36.159
You you have to plan.

01:15:36.399 --> 01:15:38.159
How do you plan for tomorrow?

01:15:43.840 --> 01:15:51.439
I I think if I have to answer that in a short sort of way, it's it's prayers.

01:15:53.760 --> 01:16:05.520
I can't even explain how I move, how I went back to work, how the minute I open that classroom door, I have to be on stage for those kids.

01:16:06.720 --> 01:16:08.159
Prayers and Lucas.

01:16:09.279 --> 01:16:25.920
There is no way that I'm gonna throw myself on a bed or go down any sort of rut, you know.

01:16:26.000 --> 01:16:28.319
I I I just want to honor him, honestly.

01:16:28.479 --> 01:16:31.119
There I I feel him, I know he's around.

01:16:31.439 --> 01:16:37.039
There are signs, you just have to keep your head up, your eyes, your ears, and and your heart open.

01:16:37.119 --> 01:16:38.079
The signs are there.

01:16:38.239 --> 01:16:39.359
There's no way.

01:16:39.680 --> 01:16:53.119
I found in one of Lucas's like boxes that I have in the room, I found a beautiful sort of like worksheet and drawing that summed it up.

01:16:54.079 --> 01:17:05.279
It was a prayer between God and a child, and God is telling the child it's time for you to go to earth, and you're gonna be with an angel.

01:17:05.920 --> 01:17:08.640
And the child tells God, What are you talking about?

01:17:08.720 --> 01:17:09.840
Like I belong to you.

01:17:10.079 --> 01:17:11.520
Why are you sending me anywhere?

01:17:11.680 --> 01:17:13.119
How am I gonna speak to you?

01:17:13.359 --> 01:17:19.039
Well, your angel will teach you, but how am I gonna how my don't worry about it, you know?

01:17:19.199 --> 01:17:22.000
And and that's the way, honestly, that's that's life.

01:17:22.159 --> 01:17:26.079
Our children are ours for for a short amount of time.

01:17:26.560 --> 01:17:28.800
What happened to Lucas wasn't natural.

01:17:31.119 --> 01:17:32.079
But we're here now.

01:17:32.239 --> 01:17:33.279
So what's our purpose?

01:17:33.359 --> 01:17:34.800
How are we gonna honor Lucas?

01:17:36.720 --> 01:17:50.399
I consider ourselves to be very blessed to have answers, to not just be told, oh, shallow drowning or shallow water drowning, or we know what happened to Lucas.

01:17:50.640 --> 01:17:51.680
That's a blessing, right?

01:17:51.760 --> 01:17:53.039
How are we moving forward with this?

01:17:53.119 --> 01:17:54.079
How are we gonna honor him?

01:17:54.159 --> 01:17:55.359
How are we gonna help people?

01:17:55.760 --> 01:17:59.840
Let's spread the word, let's advocate, let's raise funds, let's help people.

01:18:02.640 --> 01:18:05.600
So prayers, I think.

01:18:05.680 --> 01:18:18.720
I wake up being thankful that we have him, that we had him, and I go to bed every night being thankful for the life that he that he had.

01:18:19.279 --> 01:18:26.960
I mean, I said it before and just the amount of of of help that we get still to this day.

01:18:27.199 --> 01:18:37.279
I mean, there are random people that that I may be wearing a t-shirt or I might be doing like a service event, and people walk up to me and they say, I'm so sorry, you know, like I've I prayed for you.

01:18:37.359 --> 01:18:39.840
You don't even know me, and I and I prayed for you.

01:18:40.239 --> 01:18:43.119
So yeah, I'm holding on to that.

01:18:44.880 --> 01:18:45.439
Yeah.

01:18:45.680 --> 01:18:53.520
Um, you know, she she made a point, and this is this goes back to like, oh, you guys are so strong.

01:18:57.279 --> 01:18:59.600
I I don't know what that means, right?

01:18:59.760 --> 01:19:11.760
Uh we had a friend of ours, a mutual friend of ours, that he lost his child, uh, Lucas's schoolmate, a year younger than Lucas, and he lost his child, I believe he was nine years old.

01:19:12.560 --> 01:19:21.199
And I remember Jan the vividly when Jan told me one day at Lucas' soccer practice that that he lost his son, I I broke down crying.

01:19:21.600 --> 01:19:23.359
I because I couldn't believe it.

01:19:23.760 --> 01:19:34.720
And and then I would see this gentleman, which is a larger than life human being, like the life of the party, and he's just a big guy, and just and I'm like, how?

01:19:35.119 --> 01:19:36.560
How how does he go on?

01:19:36.720 --> 01:19:37.920
How does he still smile?

01:19:38.079 --> 01:19:40.079
How does he how does he not take his life?

01:19:40.159 --> 01:19:44.000
Like, how do you move past losing your child?

01:19:44.800 --> 01:19:49.359
And now being in that position, I I get it.

01:19:50.159 --> 01:19:57.520
And I will say that Jan Jan was raised in a religious household.

01:19:57.680 --> 01:19:59.600
Jan went to uh epiphany.

01:20:00.159 --> 01:20:02.880
If I remember correctly, and then she graduated from the Lord's.

01:20:02.960 --> 01:20:04.800
So she has that religious background.

01:20:04.960 --> 01:20:17.600
I would say it wasn't till I met, I didn't grow up that way, till I met Jess, that she really started nudging me is a better word than pushing me to find my spiritual, to start my spiritual journey.

01:20:17.760 --> 01:20:22.159
She has, and we started going to church and you know, she's helping me and teaching me how to pray.

01:20:22.239 --> 01:20:25.119
And and and Lucas played a huge role in this as well.

01:20:25.279 --> 01:20:26.880
Lucas, you know, going to St.

01:20:27.039 --> 01:20:28.560
Timothy and then Berlin.

01:20:28.880 --> 01:20:38.880
Um just the way that he would pray in the the writings now that I see that he would, the memos and stuff that he would write, and the belief in prayer helped me get there.

01:20:39.039 --> 01:20:43.920
But I wasn't there when I wasn't where they're at when Lucas passed away.

01:20:44.000 --> 01:20:51.279
So of course I did encounter what mo what what a lot of parents could imagine, right?

01:20:51.520 --> 01:21:00.399
Those two o'clock in the morning bike rides, though, you know, walking to Keepers Game Bridge early morning, the sleepless nights, the sleeping on the couch, the all of them, right?

01:21:00.479 --> 01:21:11.760
Like any, any, anything that you've ever seen in a movie or whatnot, like I've been through that, but you know, I remember Justinea telling me, we and her and I got into, I have was having a bad day.

01:21:11.920 --> 01:21:16.960
And I said to her, Babe, all I want to do is get in my truck and drive to Wyoming.

01:21:17.119 --> 01:21:17.520
Just leave.

01:21:17.600 --> 01:21:21.680
And then she says, If if I give you permission, will you do it?

01:21:21.840 --> 01:21:23.840
And I said, I'll grab my keys right now and leave.

01:21:23.920 --> 01:21:25.119
And she goes, You can't.

01:21:25.279 --> 01:21:27.680
You have two of the little babies, you can't.

01:21:27.920 --> 01:21:29.119
You gotta be there for them.

01:21:29.279 --> 01:21:30.239
You gotta be there for me.

01:21:30.319 --> 01:21:34.239
You gotta be there for everybody that's mourning Lucas, just like you're mourning him.

01:21:34.479 --> 01:21:40.800
So we I I did have that that rough, you know, still to this day, but I did have that rough patch.

01:21:42.960 --> 01:21:45.039
I didn't want to see anybody after they passed.

01:21:45.119 --> 01:21:46.399
I didn't want nobody coming at my door.

01:21:46.479 --> 01:21:49.199
I didn't want to answer text message, I didn't want to answer phone calls.

01:21:49.359 --> 01:21:55.520
I called my cousin and I said, um, I need to see.

01:21:55.920 --> 01:22:03.520
I'm not using his name because I don't have permission to use his name, but I want to see this gentleman, the guy that the the friend of mine that lost his son.

01:22:03.760 --> 01:22:05.279
I said, That's the only guy that I want.

01:22:05.359 --> 01:22:07.840
And he says, He'll be here at nine o'clock in the morning.

01:22:08.000 --> 01:22:20.800
So I remember he comes in through the door, gives me a hug, very serious, sits down next to me on the couch, puts his hand on my thigh, and I ask him, How?

01:22:21.600 --> 01:22:22.560
How are you here?

01:22:22.720 --> 01:22:23.439
How do you do this?

01:22:23.520 --> 01:22:25.199
How do I how do you move on?

01:22:25.439 --> 01:22:31.119
And he goes, as confident as I'm speaking to you right now, he says, It's not me.

01:22:31.760 --> 01:22:32.479
It's Jesus.

01:22:33.359 --> 01:22:34.079
It's Jesus.

01:22:36.239 --> 01:22:38.479
I get emotional, he doesn't get emotional.

01:22:38.640 --> 01:22:44.560
He's with his his conviction, his conviction is so strong that he didn't get emotional.

01:22:45.119 --> 01:22:53.600
And he said to me, probably the most profound words that I have heard in the past seven months is we are spiritual beings living the human experience.

01:22:54.640 --> 01:22:55.199
That's it.

01:22:56.000 --> 01:23:07.039
And those words have resonated to Jan's point on how yes, we lost a son in a physical form, but I don't believe that we lost a son in the spiritual form.

01:23:09.840 --> 01:23:14.800
I have sense this is tough, right?

01:23:14.960 --> 01:23:24.640
Because when I I am now practicing something new that I've never practiced before, and the correlation is because I've lost my son.

01:23:24.880 --> 01:23:38.319
So for me, diving into the Bibles, prayer, even watching the chosen is incredibly emotional for me because I make the correlation of I am talking to my son that's not here in front of me.

01:23:38.479 --> 01:23:43.840
So that journey itself has been challenging to say the least, but I push through it.

01:23:44.079 --> 01:23:49.920
And waking up in the mornings now is fostering that energy and that love.

01:23:50.079 --> 01:23:54.079
You know, uh, what's the saying from Interstellar that Lucas loves so much?

01:23:54.239 --> 01:23:57.680
Uh love transcends through time and space.

01:23:58.079 --> 01:24:08.399
Um, and I foster that love to Kalia and Nash and Jess and Jan and Joka and those people that really, really connected with Lucas and love Lucas.

01:24:08.720 --> 01:24:28.640
And that's kind of how I've played out my days is yeah, besides firefighting and gym life and all this stuff, how do I continue to honor Lucas, listening to his little voice in my head saying, jump on that podcast, make that post, spread the message, let people know we now serve a purpose.

01:24:28.800 --> 01:24:39.359
And then when I've learned about the spiritual side of it, on what he is experienced now on that side, is he's not feeling pain.

01:24:39.439 --> 01:24:44.159
He's not, he's in the most beautiful place in the world or the beautiful place in existence.

01:24:44.319 --> 01:24:51.039
So to him, he's almost like, hey guys, I know that you're sad for me, but don't be sad for me because here I am.

01:24:51.279 --> 01:24:55.119
Father Willie gave a prayer on Lucas' six-month anniversary.

01:24:55.760 --> 01:25:03.039
And he started off the prayer and he said, I used to pray for Lucas.

01:25:04.720 --> 01:25:17.680
I now pray to Lucas because he believes without a shadow of a doubt that Lucas is in heaven and that he just beat us there, and that our goal is to get there and to see him again.

01:25:18.239 --> 01:25:28.399
So his love and his passion and his everything, Jan has a million videos of Lucas that she sends all the time, and so does my wife.

01:25:28.560 --> 01:25:37.199
And now being able to finally sit and watch him in a different view, and this is my advice to parents out there our days are crazy.

01:25:37.359 --> 01:25:55.439
You got bills to pay, you got practices to go to, you got homework to do, is to just take a moment and reflect like what a gift you have to have Ben and your future children, that they are a gift from God, and that we are to thank him every day for having that.

01:25:55.520 --> 01:25:58.000
Yes, I understand life is wild.

01:25:58.319 --> 01:26:08.079
But looking back at it now, going, man, Lucas gave us so much joy for those almost 16 years of his of his of his life, and he was truly a joy to be around.

01:26:08.159 --> 01:26:10.079
So I think that's our purpose now.

01:26:11.920 --> 01:26:17.680
That's uh uh you sharing that reminds me, and I think I had mentioned this to you some months back.

01:26:17.840 --> 01:26:28.000
Uh, when I was a kid, my my grandma, my maternal grandmother, uh she passed away when I was uh God, I want to say 12.

01:26:28.319 --> 01:26:34.319
Uh but I remember having a dream shortly after she passed away.

01:26:35.039 --> 01:26:42.560
And it was my interpretation of it was we were in contact.

01:26:42.880 --> 01:26:59.920
Like we we and I'm not this very religious person, I definitely believe, uh, but man, it was like we spoke and it was this this little nudge reminder to a 12-year-old of like, hey, I'm still here here.

01:27:00.319 --> 01:27:07.119
I'm um not you can't touch me, you can't hug me, you can't eat my sopa de pollo again.

01:27:07.520 --> 01:27:16.720
Um but I I firmly believe Lucas is still here, and we see that like day in and day out.

01:27:17.039 --> 01:27:18.960
Yeah, uh go ahead, Jen sorry.

01:27:19.199 --> 01:27:20.319
No, that he told us.

01:27:20.399 --> 01:27:24.800
I mean, he he literally told us, watch the movie Interstellar.

01:27:25.039 --> 01:27:25.439
Yeah.

01:27:25.760 --> 01:27:31.760
And if you watch that movie, it's lengthy, but if you watch it the first time, your head sort of like spins and you cry.

01:27:32.079 --> 01:27:35.119
But we had the opportunity to to watch it.

01:27:35.279 --> 01:27:42.560
My husband put a beautiful viewing together at the Coral Gables Art Cinema in the Gables, and we had 160 people there.

01:27:42.640 --> 01:27:48.800
And the second time I watched it, I mean, it was even more profound and more deep.

01:27:48.960 --> 01:28:03.279
And I promise I'm gonna watch it a third time with a notebook and a pencil, like a true teacher to write down notes, but such a beautiful movie, and that's what it is that love, that energy, it transcends through everything.

01:28:03.760 --> 01:28:07.039
The signs are there, you just gotta be open to them.

01:28:07.520 --> 01:28:17.439
Um, I think that that Lucas Lucas knew that I loved that I have this um obsession with the number 89.

01:28:17.520 --> 01:28:20.000
That was my my high school collegiate's football number.

01:28:20.079 --> 01:28:21.920
That's what I named my gym train 89.

01:28:22.479 --> 01:28:33.279
So Lucas presents himself to me through his number 19, which is I'm not, I won't begin to tell you in the crazy ways that is it has appeared to me, but also number 89.

01:28:33.600 --> 01:28:44.399
And in that movie, um a couple weeks prior to him passing, we're talking in the car, and he talks, he's he's talking about that.

01:28:44.720 --> 01:28:47.920
Lucas was incredible, incredibly cerebral, like you said.

01:28:48.000 --> 01:28:54.159
He was very, very highlight uh intellectually and incredibly cerebral.

01:28:54.239 --> 01:28:55.600
He will pick apart everything.

01:28:55.840 --> 01:28:57.920
So this day we're talking about sadness and crying.

01:28:58.239 --> 01:28:59.439
He says, But I like to cry.

01:28:59.520 --> 01:29:00.720
And I go, Why do you like to cry?

01:29:00.800 --> 01:29:04.239
And he goes, Because it's a very powerful emotion.

01:29:04.479 --> 01:29:06.960
And I said, Well, Pops, it's good that you don't cry.

01:29:07.039 --> 01:29:11.359
You know, I lost both my parents, so I'm able to tap into that, but you want to avoid that as much as possible.

01:29:11.439 --> 01:29:15.199
And he goes, Well, in the movie Interstellar, I cry four times.

01:29:15.439 --> 01:29:16.560
I said, Four times?

01:29:16.720 --> 01:29:17.199
I've seen it.

01:29:17.279 --> 01:29:18.159
Well, I only saw it once.

01:29:18.239 --> 01:29:18.880
I said, I've seen it.

01:29:18.960 --> 01:29:20.960
I only cry once at the end.

01:29:21.199 --> 01:29:23.279
And he says, No, Papa, there's four times.

01:29:23.359 --> 01:29:29.039
We'll watch it together, and there's four times, and I want to see if you could pick out pick the four times that I cry.

01:29:29.359 --> 01:29:32.319
We we never got to see it in this human form.

01:29:32.399 --> 01:29:34.000
We saw it in the in the showing together.

01:29:34.079 --> 01:29:35.119
We never got there.

01:29:35.279 --> 01:30:04.560
Um, but towards the end of the movie, um, there's a very profound moment, and this isn't a spoiler, this is a movie that's been out for quite some time, but there's a very profound moment that the daughter is passing away, and she says a parent shouldn't watch their child die.

01:30:05.600 --> 01:30:07.039
Go be with your family.

01:30:07.680 --> 01:30:10.159
I don't know if you guys have seen the movie or not.

01:30:10.319 --> 01:30:18.079
Um, but Matthew McConaughey walks away and goes to be with a child, and and she leaves he he leaves her with her new family.

01:30:18.399 --> 01:30:25.840
So and to Jan's point, uh the spiritual side of it is huge.

01:30:25.920 --> 01:30:34.560
And I believe that Lucas did talk to us, did nudge us, and is talking to us through these signs, if you will.

01:30:36.319 --> 01:30:36.800
Sorry.

01:30:43.439 --> 01:30:49.439
Now you're putting a lot of that energy towards raising awareness for Marfin and Louis Deets.

01:30:49.600 --> 01:30:53.359
And in February, we have a big event coming up.

01:30:53.600 --> 01:30:56.319
You want to share a little bit about the event?

01:30:56.720 --> 01:30:58.479
Um so we have two events coming up.

01:30:58.720 --> 01:31:02.159
The first one is November 22nd and it's the Run for Life.

01:31:02.560 --> 01:31:02.800
Right.

01:31:02.960 --> 01:31:05.760
So on November 22nd at 7 a.m.

01:31:06.079 --> 01:31:14.640
at the Zoom Miami, they're gonna have a 5K run, but you can walk or crawl or jump in the back of a wagon.

01:31:15.199 --> 01:31:20.159
You can either donate and participate or participate and donate.

01:31:20.640 --> 01:31:28.560
But um, I thought it would be a nice way to sort of start the morning and and uh raise awareness for organ doning.

01:31:28.800 --> 01:31:31.520
That's been a whole other beautiful aspect.

01:31:31.840 --> 01:31:39.520
Um last summer I told Lucas, you're gonna be 16 soon.

01:31:40.319 --> 01:31:43.600
You have the summer to get your learner's permit.

01:31:43.840 --> 01:31:45.680
So I sort of forced him to do that.

01:31:45.840 --> 01:31:47.680
He was a very late bloomer.

01:31:47.840 --> 01:31:57.199
Um, I made the appointment, asked Mike to take him, and he went with one of his really good buddies to get the uh the learner's permit.

01:31:57.279 --> 01:32:01.279
And in that learner's permit, he selected to be an organ donor.

01:32:02.640 --> 01:32:15.680
So on that day after the um the police sort of came to speak to us, they mentioned the the organ doning, and that was something else that's sort of like, do we follow through with it?

01:32:15.760 --> 01:32:16.239
What do we do?

01:32:16.319 --> 01:32:19.359
I mean, there were so many decisions to be made and everything was so fresh.

01:32:19.520 --> 01:32:24.079
So I'm so, so happy that we decided to proceed with that.

01:32:24.880 --> 01:32:34.640
I remember several months after asking Joka and Mike and Jessica, hey, you know, have you guys like received anything about the organ donning?

01:32:34.800 --> 01:32:36.960
I like, I don't even know how this stuff works.

01:32:37.199 --> 01:32:44.319
And I kid you not, maybe two days later I received the most beautiful letter from this company called Beauty of Sight.

01:32:45.840 --> 01:32:52.079
I went straight to the bottom and called the lady who who wrote it and who actually put it in the mail.

01:32:52.239 --> 01:32:54.319
It wasn't even an email, it was a physical letter.

01:32:54.479 --> 01:33:05.680
And I called her and I told her, Debbie, you know, this is so beautiful that you have this letter written to the families, and and you know, you're like honoring us for choosing this to help others.

01:33:05.760 --> 01:33:13.199
And so Lucas's cornea were donated and you know, thus helping others.

01:33:13.359 --> 01:33:15.279
So I just thought it was so beautiful.

01:33:15.439 --> 01:33:22.720
And in those boxes that I was talking about earlier, I happened to God incidents come across a paper.

01:33:22.880 --> 01:33:28.000
Um, it was sort of like an interview, and it was like if you had all the money in the world, what would you get?

01:33:28.239 --> 01:33:32.319
And one of the last things that Lucas mentioned, he must have been maybe in second grade.

01:33:32.479 --> 01:33:40.000
He said, and I'd also donate money to fix my mom's eyes.

01:33:40.239 --> 01:33:42.319
So for me, it's like full circle.

01:33:42.479 --> 01:33:53.359
Um, everybody on my maternal side, we have a macular degeneration, so we're losing our central vision and our colors making it difficult to read and and to drive in the sun and and whatnot.

01:33:53.600 --> 01:33:56.800
But here I am full circle now.

01:33:56.960 --> 01:34:02.960
You know, my son's eyes, I have no idea, but the other organs just but but his eyes, I mean, come on.

01:34:03.279 --> 01:34:11.279
So we are taking part in this walk on the 22nd of November at Zoo, Miami uh for an amazing cause.

01:34:11.520 --> 01:34:13.439
And then I'll let Mike talk about the Marfin.

01:34:13.760 --> 01:34:14.000
Yeah.

01:34:14.239 --> 01:34:18.319
And we connected with the Marfin Foundation clearly at the at the conference.

01:34:18.560 --> 01:34:22.880
And in that, they have what's called the Walk for Victory.

01:34:23.039 --> 01:34:34.880
They've been doing it for quite some time now, where it's a tour across the country, and they raise uh awareness and funds for Marfan, Louise Dietz VEDS, and other connective tissue disorders.

01:34:35.119 --> 01:34:42.880
And it's a uh very it's a casual show, it's a one-day event, and um there's sponsorship opportunities and obviously participation opportunities.

01:34:42.960 --> 01:34:47.520
Well, they in that we said, hey guys, we're we're all in, like this is what we're all about.

01:34:47.600 --> 01:34:51.840
Let us know how we could sign up, let us know how we could name a team, create a team.

01:34:52.079 --> 01:35:00.800
Well, they turned around and said, we would be honored if you guys would be the co-chair family representing Louis Dietz down in South Florida.

01:35:01.039 --> 01:35:05.359
So um we, of course, were honored and we jumped all over it.

01:35:05.600 --> 01:35:15.840
And the the walk is now uh the walk is February 1st, 2026 at TY Park in Broward.

01:35:16.800 --> 01:35:20.560
And anybody that wants to participate um could join.

01:35:20.640 --> 01:35:23.199
It's$25 to just go and walk.

01:35:23.359 --> 01:35:25.840
Uh you s and your children are free.

01:35:26.159 --> 01:35:36.159
If um you pay$25 online under Team Lucas, you also have the opportunity to rate either donate or raise more money above the$25.

01:35:36.960 --> 01:35:47.199
Uh I did say to them we had we've made these hats, one of them that I'm wearing now uh for Lucas, it's number 19, and it represents uh there's there's four components of it.

01:35:47.279 --> 01:35:56.399
Is white represents heaven, number 19 his water polo, the the colors blue and yellow represent Belen, and then the cross for his uh spirituality.

01:35:56.800 --> 01:36:04.720
And um I said I would like to somehow get caps and and shirts into Team Lucas caps and shirts into people's hands.

01:36:04.800 --> 01:36:06.239
They said, look, let's do this.

01:36:06.560 --> 01:36:16.800
If anybody raises over$190, so$19,$190, we will give them a cap, an official Team Lucas cap and shirt.

01:36:17.039 --> 01:36:19.279
So um how do you register?

01:36:19.439 --> 01:36:21.520
You could go to the link in my Instagram bio.

01:36:21.600 --> 01:36:23.920
We'll put this on the podcast bio.

01:36:24.319 --> 01:36:27.279
You go, you you sign up under Team Lucas.

01:36:27.359 --> 01:36:30.319
Again, you could just pay the$25, come and just walk with us.

01:36:30.479 --> 01:36:35.600
It's a beautiful stroll around a beautiful lake in TY Park and Broward.

01:36:36.720 --> 01:36:45.760
I did lean on them and I said, listen, I got a huge fitness community, not only on the CrossFit side, but on the firefighter side, because a lot of those guys are incredibly fit.

01:36:45.920 --> 01:36:52.960
I said, we have a tradition where we honor um, you know, people that have passed away by creating a workout.

01:36:53.039 --> 01:36:54.720
And we created a workout named Lucas.

01:36:55.199 --> 01:36:58.479
Would you allow me to host the workout prior to the walk?

01:36:58.560 --> 01:36:59.840
And they said, absolutely.

01:37:00.079 --> 01:37:04.479
So they're they're closing off a space for us to perform the Lucas workout.

01:37:04.640 --> 01:37:12.159
Um it's a 19-minute body weight only scale to whatever people's levels of fitness is, and that happens at 11 a.m.

01:37:12.479 --> 01:37:15.039
And then it's like I said, it's only a 19-minute workout.

01:37:15.199 --> 01:37:30.319
From there, the festivities start at noon, and there'll be you know food and vendors and music and just um it's the one of the beautiful things that well, there's two very beautiful things that happen here with this organization.

01:37:30.640 --> 01:37:37.359
Um, they're you got to go to their website and look at their uh their accrediting and where the money gets distributed.

01:37:37.439 --> 01:37:40.640
They're incredibly transparent on where the funds go.

01:37:41.600 --> 01:37:42.000
Yeah.

01:37:42.560 --> 01:37:46.239
Very important, especially for that, for an organization that's raising funds.

01:37:46.479 --> 01:37:48.800
So they're very transparent about that.

01:37:49.039 --> 01:37:54.079
But also is they use these events as a diagnostic tool.

01:37:54.399 --> 01:38:07.920
So they have physicians, practitioners that come out there and they help do screenings and uh echocardiograms, if I'm correct, if I remember specifically, to diagnose.

01:38:08.079 --> 01:38:24.319
And what they find is that at many of these walks, they're diagnosing two, three, four, five, six people that just show up for support or because they're maybe curious, like could my son or could my daughter or could I have this?

01:38:24.479 --> 01:38:31.680
They go through the screening process and they get diagnosed, which is huge in the whole purpose of that movement within itself.

01:38:31.840 --> 01:38:34.960
So those are the two events that we're you know contributing to.

01:38:35.039 --> 01:38:39.840
They take up you know a lot of our welcome time in order to help push through there.

01:38:40.079 --> 01:38:50.399
And um, and like I said, you could either go straight to the link in my Instagram bio and sign up, or you could go to the the description side of this episode if you could put that, Rob.

01:38:50.720 --> 01:38:51.439
I appreciate it.

01:38:51.680 --> 01:38:54.239
So, yeah, so that's what we're driven to do now.

01:38:54.880 --> 01:38:56.159
Or Louis Deeds.

01:38:58.960 --> 01:39:07.199
Is an echocardiogram the only genetic testing component.

01:39:07.600 --> 01:39:11.840
The echocardiogram, to my understanding, the echocardiogram is looking for an annuism, right?

01:39:11.920 --> 01:39:13.600
Annihilation of that ayota.

01:39:47.439 --> 01:39:51.920
We need for the testing, and how do we um solve whatever your problem is, right?

01:40:17.439 --> 01:40:19.920
So do you have a vision?

01:40:25.520 --> 01:40:39.600
How you can see Big Vision here.

01:40:40.079 --> 01:40:49.199
So what I've what I've kind of foreseen is, you know, without calling names or blaming anybody or anything, right?

01:40:49.439 --> 01:41:18.079
But when you walk into a specialist for something that is not quite normal, let's call it bilateral club feat, me maybe there's even just a pamphlet that says, hey mom, dad, you might want to read this because the made aware of, right?

01:41:18.159 --> 01:41:24.159
So that confession is first responders.

01:41:25.119 --> 01:41:31.119
This first happened, and I said, Have any of you heard the word Marfans or even Louis Dietz?

01:41:31.520 --> 01:41:33.680
And all but one heard of it.

01:41:33.840 --> 01:41:35.520
And I said, Why did you hear about it?

01:41:35.680 --> 01:41:37.119
I said, Jose, why'd you hear?

01:41:37.279 --> 01:41:38.399
How do you know about Marfan?

01:41:38.560 --> 01:42:40.239
He goes, Because I had or the chest, the sunken chest is a sympt is a sign of about it because they had if I was to go into a um, how flexible are you no frontline?

01:42:52.479 --> 01:42:58.479
Hey, be made aware that more hidden than what you're thinking of.

01:42:58.560 --> 01:43:00.159
Don't don't look at things at face value.

01:43:00.239 --> 01:43:01.600
He has bilateral cloffy.

01:43:01.760 --> 01:43:03.439
Okay, let's call it a day and treat the symptoms.

01:43:03.600 --> 01:43:05.840
No, what caused the bilateral cloffy?

01:43:06.079 --> 01:43:08.079
So that's in the direction that we're looking to go.

01:43:08.239 --> 01:43:11.840
And I believe that the organizations that we've teamed up with could help us get there.

01:43:36.960 --> 01:43:46.640
One of the things you said was just early on, like take advantage of all those moments and you know, a lot sitting with Ben, my son late at night, not late at night, but putting him to sleep.

01:43:46.720 --> 01:43:49.359
I'd sit there and I'd think about you, I think about Lucas.

01:43:50.079 --> 01:43:51.760
And then and I'm very grateful.

01:43:51.920 --> 01:44:05.600
I think Eric and I are both very grateful right now that we're able to help in this, you know, spread spread Lucas' message and and and be here for both of you who we've known for a long time.

01:44:07.600 --> 01:44:12.159
And just thank you.

01:44:12.960 --> 01:44:15.359
You know, you're welcome.

01:44:15.680 --> 01:44:16.560
Thank you.

01:44:16.880 --> 01:44:34.800
And I've thought about about this a lot too, is Mike Jess, Jokka, and I and our families are no different than or not special because or everybody carries a cross, right?

01:44:34.960 --> 01:44:36.640
One, two, three, four crosses.

01:44:36.720 --> 01:44:39.840
Everybody has their it's not that we're strong.

01:44:40.479 --> 01:44:42.479
It's just that, you know, we gotta do this.

01:44:42.560 --> 01:44:44.000
We gotta do this for Lucas.

01:44:44.720 --> 01:44:50.000
You know, he's he's not here with us, but we're gonna do this for him.

01:44:50.640 --> 01:44:53.359
Um, and make him proud and honor him.

01:44:53.680 --> 01:45:06.960
So I just want to say thank you to the three of you for for letting me come and talk about Lucas, because there's nothing that makes me happier in life than to remember him and to think about him and to talk about him.

01:45:07.359 --> 01:45:08.159
So thank you.

01:45:09.600 --> 01:45:10.479
Thank you, boys.

01:45:10.640 --> 01:45:11.039
For sure.

01:45:11.520 --> 01:45:15.039
Was there uh any other thing that you guys wanted to throw out there?

01:45:15.760 --> 01:45:18.319
Because there was one thing that I I wanted to say.

01:45:18.560 --> 01:45:19.119
Yeah, please.

01:45:19.359 --> 01:45:26.079
I know you guys say like, you know, we're not strong or whatever else, and and uh it it takes strength.

01:45:26.479 --> 01:45:31.439
So I I know you say we're not or this or that, that you are.

01:45:31.760 --> 01:45:38.479
Like at least not being you two, just observing and seeing what you all are are doing.

01:45:38.560 --> 01:45:40.079
It does take strength.

01:45:40.319 --> 01:45:42.560
More importantly, it takes love.

01:45:43.840 --> 01:45:45.600
And you guys are making it happen.

01:45:45.760 --> 01:45:58.880
So I think I could speak for everyone in the community when I also say thank you for putting the message out there and doing all these things, or the main cave's meetup group and all of that.

01:45:59.119 --> 01:46:04.960
My brother is very much like, How can we help Mike and do all these things?

01:46:05.119 --> 01:46:08.399
So And that's just like one little subgroup.

01:46:08.560 --> 01:46:12.000
Like what you guys are doing is huge, so don't stop.

01:46:12.479 --> 01:46:17.039
The the communities and and communities, because there's so many.

01:46:17.279 --> 01:46:22.880
Mike has a vast amount, I have you know a handful, and together we have so many.

01:46:23.039 --> 01:46:27.520
It's just I I remember Lucas passed on my mom's birthday.

01:46:27.760 --> 01:46:31.760
When I tell you my mom uh adored Lucas, it's an understatement.

01:46:32.239 --> 01:46:41.920
Um when when it was all sort of like said and done, Father Willie came to the house and and told us, you know, you have a choice.

01:46:42.079 --> 01:46:43.840
Do you want to be bitter or better?

01:46:44.079 --> 01:46:45.920
I mean, hands down, we want to be better.

01:46:46.079 --> 01:46:49.279
Who wants to go through life being being bitter?

01:46:49.680 --> 01:47:02.159
And you know, then we have this majestic, royal, I mean, over the top, fabulous service for Lucas that when it was all over, I was just blown away.

01:47:02.239 --> 01:47:09.279
I mean, the day was like air conditioning perfect, the amount of people, the readings, Father Willie's homily, the music.

01:47:09.439 --> 01:47:11.119
It was just like mind-blowing.

01:47:11.199 --> 01:47:12.079
And it was my birthday.

01:47:12.159 --> 01:47:17.279
And I remember everybody was like walking on pins and needles, like, what do you want to do?

01:47:17.359 --> 01:47:18.000
Do you want to go home?

01:47:18.079 --> 01:47:18.399
Do you want to?

01:47:18.479 --> 01:47:19.680
I'm like, I want to go celebrate.

01:47:19.920 --> 01:47:20.880
Like, it's my birthday.

01:47:21.039 --> 01:47:25.439
What better gift could I have received than than my son?

01:47:26.560 --> 01:47:31.439
And the other day I was uh, you know, supporting my sister.

01:47:31.600 --> 01:47:35.359
She had a friend of hers that whose husband passed away.

01:47:35.520 --> 01:47:41.359
And I was in the in the caravan on the way to Our Lady of Mercy, same place Lucas was in.

01:47:41.439 --> 01:47:45.600
And I and I actually thought, how was Lucas's caravan?

01:47:45.680 --> 01:47:48.880
Like I had a brain fart, and I was thinking, my God, we didn't have one.

01:47:49.039 --> 01:47:53.039
And how lucky were we that we didn't have that caravan, Mike?

01:47:53.119 --> 01:48:04.079
You know, that on Lucas' birthday, April 12th, we were blessed enough to have a super intimate burial with Lucas at Our Lady of Mercy.

01:48:04.159 --> 01:48:08.000
Like we didn't have to go through all that craziness, if you will.

01:48:08.800 --> 01:48:09.199
Yeah.

01:48:09.359 --> 01:48:13.359
Um, a lot of things are a blur during that during that time.

01:48:13.520 --> 01:48:20.560
I will tell you that, uh, and I'm glad you prompted me, Eric, because it it it's well, well deserved and needed to be said chance.

01:48:20.720 --> 01:48:24.000
So she's always been great with this, but it's it's thanking everybody.

01:48:24.159 --> 01:48:25.439
You know, I I mentioned it earlier.

01:48:25.520 --> 01:48:31.840
I have 324 text messages on my phone from those three or four days of people just showing love.

01:48:32.640 --> 01:48:41.920
And I have seen grown men cry to me even two weeks ago at Smoothie King that I don't even know.

01:48:42.960 --> 01:48:51.680
But they are a father to a son that goes to Ben, and they could feel our pain and the love that those gentlemen have for their kids.

01:48:51.920 --> 01:48:55.279
Um, that community, the text messages, the DMs.

01:48:55.680 --> 01:49:03.439
I get sent spiritual songs and and uh and reels all day long, every time.

01:49:03.760 --> 01:49:06.399
Emails, phone calls, the what can we do.

01:49:09.439 --> 01:49:10.399
They're not overlooked.

01:49:10.479 --> 01:49:14.640
It's difficult sometimes to respond to all of them, and they're difficult in in two ways.

01:49:14.800 --> 01:49:22.000
Logistically, like the the time span to answer them, and then emotionally, it's tough to like sit back and read them and then send them.

01:49:22.159 --> 01:49:32.640
I have Lucas's bed, it's cover I haven't touched Lucas's bed, it's covered with books and letters and gifts and memorabilia that it's just incredibly overwhelming.

01:49:32.720 --> 01:49:37.359
So the love and support that we've gotten from all of these individuals, community does help us.

01:49:37.520 --> 01:49:42.399
So to answer the question, because people want to know what what can we do?

01:49:42.800 --> 01:49:44.319
How how do I how do I help?

01:49:44.399 --> 01:49:46.560
How do I make easier pain a little bit?

01:49:49.039 --> 01:49:49.680
It could help.

01:49:49.760 --> 01:49:54.479
They would could come just a walk with us, and and it would be an opportunity for myself to hug.

01:50:01.600 --> 01:50:13.199
Danny's there, and Danny, man, he comes up to me, gives me the biggest hug, his eyes get watery, he goes, Mike, I cried everyone.

01:50:20.640 --> 01:50:30.560
It's just help support, raise awareness, come walk with us, come give us hugs, um, come, you know, share that moment with us that I I believe is going to be beautiful on February 1st.

01:50:30.640 --> 01:50:39.520
And then um, you know, from from our families, from my wife Jesania from Jokau, we appreciate everybody that has reached out to us and given us so much love over the past seven months.

01:50:40.319 --> 01:50:41.279
So thank you guys.

01:50:41.520 --> 01:50:42.000
Thank you.