The Blog

When Doug and Tina’s fourth son, Anthony, was born with muscular dystrophy, they faced new challenges as parents. “We didn’t know what to do,” Tina recalls. “We didn’t know what kind of life he could have. We had no idea how to parent a child who de…

By Rachel, Ella's mom Ella has Nemaline Rod Myopathy and an immunoglobulin deficiency. Her skeletal muscles are profoundly weak, which makes endurance difficult and breathing on her own for long periods exhausting. Ella was trached in 2016 after get…

By Shannon, Penny's mom When I was pregnant, I daydreamed about what it would be like to hold my baby. I imagined taking her for a walk in the park, but all of that changed when Penny was born with Pierre Robin Syndrome. I realized pretty quickly th…

“Paris has cerebral palsy. But she is so much more than her condition.” When Paris was diagnosed with CP at birth, Krystal knew the disorder would impact her daughter in many ways. But she determined early on that she wouldn’t let it define Paris. “…

By Martha, Justin's mom I wish more people understood that having a son with Down syndrome did change my family’s life for sure, but that Justin changed us for the better. Justin has taught us to value life more and appreciate what we are given. We …