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Parent to Parent

Finding the Perfect Therapy Team for My Son

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 […]

The Beauty of a Father’s Love

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 […]

More Than a Nurse

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 getting RSV, […]

Shannon’s Story – A Mother’s Day Tribute to Mothers of Medically Fragile Children

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 […]

Paris, First and Foremost

“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 […]

Changed for the Better

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 […]

The Joys and Fears of Parenting a Medically Fragile Child

By Kizzie’s mom, Amanda I still remember the day that I found out I was pregnant with our little Kizzie Jane. I was overwhelmed with joy and fear. I was so excited to be pregnant again after a miscarriage. But […]

Celebrating Nathaniel’s “Inchstones”

By Nathaniel’s mom, Alysha “To have joy in your heart, one must know how to appreciate the small things in life.”  – Unknown Our son Nathaniel was born with a rare SCN2a genetic mutation. Because of this mutation, he is […]

Facing Challenges Together

“We all know that there are no days off when you’re a parent,” Jeffrey says. “However, many people don’t understand that when you’re a parent of a special needs child, there aren’t even any moments off. When Gabriel goes to […]

Raising an Orchid

Ten years ago, Oscar sat with his wife in a hospital room, his six-month-old son in his arms, and learned about the disease that had changed their lives forever. Spinal muscular atrophy. As Oscar listened to the doctor describe the […]