Community Spotlight: David Alvarez

David Alvarez is a 19-year-old student from Seymour, Conn., majoring in Business Management/Administration and Marketing at the University of Bridgeport. He is also the founder of MADE Clothing, a business venture he began in high school to empower and remember those who have “made it” (or are currently “making it”) through their personal struggles. This was important to David after he was diagnosed with spinal muscular atrophy (SMA) seven days before his 17th birthday.

David was always passionate about sports and began playing them at the age of 5. At one point, a soccer coach commented to his parents that David was a slower runner than the rest of his teammates, but knowing the competitive nature of youth sports, his parents did not see these comments as a warning of anything more concerning. However, his difference in strength compared to his other teammates became more prominent in middle school, which raised red flags for him and his family. “I started to feel weaker going to the stairs and walking long distances,” he said. Taking the school bus to school, David said he noticed his classmates would skip steps going up the bus stairs while he struggled to just get on.

His mom decided to seek answers. The first stop was to the pediatrician, who then referred them or an orthopedic doctor. The doctor was worried David was going to injure himself, so he recommended he be very careful and “be as lazy as possible.” David withdrew from playing sports and took the elevator whenever possible, but he still had no diagnosis. Through this experience, David would say he was “just weak” or “not strong.” Through it all, though, he remained motivated to continue living his life as normal as possible.

Even after David’s pediatrician retired, his parents continued to search for answers. They requested all his medical records and that’s when they noticed David was never referred to a neurologist. After this visit, a genetic test was performed and David was diagnosed with SMA Type 3 – a condition no one in his family had ever heard of. He began treatment soon after his diagnosis.

David feels relief to finally have answers. “For 16 years, people kept asking me why I walk like this or run like that, and I just said I was weak. It didn’t make sense to people,” he said. “It was very difficult to deal with not knowing what was wrong with me. Knowing my diagnosis, and knowing there’s treatment, was reassuring.”

After David’s mom discovered Cure SMA on Facebook, his whole family attended the Annual SMA Conference in June 2019. For David, being part of the SMA community feels like “one giant family”. His favorite part of the conference – aside from the incredible California weather – was meeting people who had gone through experiences like his. “You can speak to someone and be confident because you went through the same thing,” he concluded.

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