Aviles Family

Our Duchenne journey began like so many others. Gabe, our fourth son, wasn’t reaching his developmental milestones. His doctor told us there was nothing wrong with him, and that, as the “baby,” he was just spoiled. When we received his diagnosis, we heard that phrase that makes time stand still: “Give him a good life, because it will be a short one.” Gabe was diagnosed just days before his first birthday. Like so many other Duchenne parents, we began researching the best doctors, clinical trials, etc., and began doing as much as we could to give our son the best, longest life possible. Not too long into our journey, I heard about CureDuchenne and immediately connected with Paul and Debra and began attending both local events and FUTURES. Over the years, the more I got to know the CureDuchenne team through events, meetings, webinars, and conversations, the more evident it was to me that they care about people just as much as they care about a cure. It is so ingrained in their DNA that Duchenne families matter. Their stories matter. The siblings matter. We aren’t just potential donors or fundraisers. We are families who are trying to navigate this messy, sticky journey called Duchenne. No two journeys are the same, yet CureDuchenne manages to meet the needs of everyone. Through CureDuchenne, we have found what every Duchenne family is longing for… HOPE. 

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