Note: This story discusses loss of a young person’s life due to a genetic aortic condition.
Mike Osuna and Jeanette Garcia-Osuna remember the first time they heard the words “Marfan Syndrome.” Just a week before, on March 28, their athletic 15-year-old son, Lucas, had suddenly passed away while competing with his high school water polo team. Now, the medical examiner revealed the cause of death: an aortic dissection. “Do you mind if we test to see if he had Marfan syndrome or another connective tissue disorder?” she asked.
“We had never even heard of Marfan,” says Mike. “But of course we were desperate to know what had happened to our son.”
The pieces of the puzzle quickly came together. His parents soon learned that Lucas’s tissue had tested negative for Marfan, but positive for Loeys-Dietz Syndrome (LDS).
“We were shocked to learn that Lucas had had many of the telltale symptoms of LDS all along,” says Jeanette, noting that Lucas had been born with bilateral clubfeet, had a prominent protruding sternum, and also struggled with allergies, asthma and eczema. Then there were his long fingers and the “huge” growth spurt in the last eight months of his life. “He shot up to 6’3” or 6’4”, but we both have long fingers and are fairly tall so we didn’t think anything of it,” she says.
But now Mike and Jeanette were puzzled. The doctors they saw in the first year of Lucas’s life to correct his clubfeet were just the beginning of a long string of specialists that the family consulted with throughout his life. A pulmonologist for the asthma, multiple orthopedic doctors, an immunologist for the allergies – and several genetic counselors. Lucas had even undergone DNA testing in 2011, but “the right box didn’t get checked” in terms of ability to identify LDS at that time, and nothing came of it from a diagnosis and care standpoint. That was one of many misses in terms of medical diagnosis. Lucas even had a split uvula – a telltale sign of a connective tissue condition. “We saw so many doctors, nobody ever noted all these things and suggested we get genetic testing again,” says Jeanette. “They just missed it.”
Mike says that thinking about all the missed signs led to intense regret, guilt, and anger in the initial months after Lucas’ death. But both parents also express some ambivalence over whether or not it would have been better to know Lucas’s diagnosis. “Lucas had the most wonderful life,” says Jeanette.
While Mike, a Palm Beach firefighter, personal trainer, and entrepreneur, and Jeanette, a pre-school teacher, divorced when Lucas was very young, the pair co-parented seamlessly and Lucas ended up with “four parents who love him and doted on him,” says Jeanette. “He was the life of the party and just go-go-go all the time. He was very adventurous – back flips into the pool, jumps off a cliff at a beach vacation, open-water swims, music concerts, you name it. We made sure his life was like Disney World.”
Mike revealed that his son’s nickname was ‘Thor’, and wrote in a social media post shortly after Lucas’s death: ‘In true Superhero fashion, he embodied perseverance, determination and overcoming all the obstacles life threw his way.”
Both parents are seizing the opportunity to channel their grief into honoring Lucas and raising awareness of Loeys-Dietz in the hope that no other family has to experience such a shocking and devastating loss. Mike realizes that Lucas’s very “public” passing – in a pool during a competition –presents an unparallelled chance to raise awareness about a rare condition amid tragic loss. In fact, local, national, and even international media picked up the story. “Lucas’ story is very compelling; I get it. I know why people want to hear about it,” he says. “And we want to honor his life by using this platform to help others and serve the community.”
The family took action quickly and formed a team for the 2026 South Florida Walk for Victory, being held on February 1 in Hollywood, FL. Their goal? To raise $19,000. But days before the event, the family had already brought in almost $34,000 and recruited 366 people to the team – making it the second largest team in Walk for Victory history. “I’m grateful,” Mike wrote on Facebook.
Mike and Jeanette are also finding joy in supporting others in similar situations. Jeanette now regularly reaches out to other mothers who have lost children to comfort them, offer an understanding ear and to suggest resources when applicable. Mike jumps in wherever he can to lend a hand and let others know they are not alone; he’s connected an affected family in a remote part of Panama to the Foundation’s resources recently.
Mike is also focused on the need to raise awareness of Loeys-Dietz for first responders and medical professionals. “I was talking with five guys at work and not one of them had ever heard of Loeys-Dietz, and this is a big, well-known department that is involved in saving lives,” he says. To that end, Mike plans to propose a special first-responder training for his fire department with the idea that this training will eventually be expanded as will more opportunities for him to educate and inform first-responders.
Both Mike and Jeanette say they feel surrounded by Lucas’ love. “Lucas was a gift from God,” says Jeanette. “I know he’s with us. I feel him. Right before Lucas passed he was telling all of us to watch the movie Interstellar. One of the central themes is that love transcends time and space. And now I know that to be true.”
Mike notes that a friend recently told him: “‘I don’t know how you do it. I would probably be suffering in silence.’ But the truth is, if I wasn’t doing these things and trying to raise awareness and help the community, I’d be on a very dark path. I’d feel like Lucas passed in vain. But our passion for helping others is also helping us heal.”
Olivia Abel has been a strategic communications and editorial professional for more than 25 years. A passionate storyteller, she’s worked as a reporter at Vanity Fair and People magazines, written freelance business stories for The New York Times and spent a decade as Editor-in-Chief of Hudson Valley magazine. Olivia shares the stories of those affected by genetic aortic and vascular conditions in her current work as director of Integrated Marketing Communications at the Marfan Foundation.