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Parent to Parent

Iyanna’s Amazing Nurses

By Shadonna, Iyanna’s mom My daughter Iyanna was born in December 2017 with a heart condition call pulmonary atresia with intact ventricular septum. Just a few hours after she was born, Iyanna coded, and they had to shock her heart. […]

Jeremiah Takes His First Steps

By Kim, Jeremiah’s mom My son Jeremiah has grown not only physically but emotionally as well with physical therapy. When Jeremiah was born, we already knew he would have a harder time with simple things such as eating, talking, and […]

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 […]