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Parent to Parent

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 […]

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 […]

Reagan and Ron

“My favorite memory with Reagan is sitting on the beach in Cape Cod with her last year,” Ron recalls. “Reagan was in an adaptive beach chair that my wife bought for her. We were just sitting on the beach. She […]

My One in a Million

When Sherry gave birth to her third daughter, Dominique, the nurses wouldn’t let her see her baby for what seemed like forever. She overheard doctors talking about trachs and vents and surgeries. She didn’t know what it all meant. In […]

A Mom’s Reflections on Caregiver Burnout

“Any mom I meet, I encourage her to be selfish.” This statement comes from Marisa, an Aveanna mom whose daughter, Brylee, was born with nemaline myopathy. After Brylee’s birth, Marisa dedicated her entire life to her daughter’s care. For the […]