The Blog

By Maira, Erik’s mom Although my son, Erik, has always been a sweet boy, when he turned three his behavior began to change. I noticed a delay in his speech when he turned three years old, which was a bit odd to us since my older daughter had been ve…

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. “…