February 9, 2023
When I think about sports, I think “How are we so incredibly lucky?” There are so many variables when it comes to Duchenne. You could be an only child and your parents could have no idea what to do. You could be an older brother of another Duchenne kid, or you could be super lucky and be Lucian’s brother.
So many times I have said my life would be easier if Joaquin was into puzzles or video games or anything else…but he is not, and he is a God damn sports guy.
I enrolled him in every sport when he was young, and when I thought he couldn’t, I called the leagues and asked if he could play down a grade…even before he had muscular dystrophy. You have to think outside the box.
And when that was also not possible, we asked incredible coaches to do the unthinkable: add a kid that could not perform to a team that was completely killing their league and who could possibly forfeit their season to add Joaquin. I honestly do not know how we got so lucky. And to play with kids that were so incredibly accepting…we just got so lucky. I think you reap what you sow. Yes, Joaquin participates in the challenger league and any other sports team he can, but in his mind he is Lucian, and before that flame completely dies, we are going to milk that vibe for everything it’s worth. And gosh darn if the coaches in our corner last week and every week played Joaquin and forfeited their first place by having him run a play.
Joaquin is “on” his brother's football team…he’s “on” the soccer team, he’s “on” the baseball team….ON challenges its meaning with Duchenne. He takes pictures with all the teams. He “sits” with all the teams…we would have never thought this was possible, but Joaquin had had some stellar coaches. Coaching doesn’t happen just on the court.
Our research and development is powered by the generous financial support of families, rare disease communities and organizations unwilling to accept the status quo of drug development practices. As a 501c3 non-profit biotech, 93+% of all donations go directly to the research and development of life-saving therapies.
We offer a number of ways to get involved with moving science forward. Learn More