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Category: Parent to Parent

Increasing Saylor's Independence
Published July 5, 2019
Saylor is a 20-month-old little girl with a rare mitochondrial disease and Fanconi Syndrome. Because of these conditions, Saylor depends on a central line with TPN for nutrition and, until recently, she required frequent hospitalizations. During the…
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Finding the Perfect Therapy Team for My Son
Published June 28, 2019
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…
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The Beauty of a Father's Love
Published June 16, 2019
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…
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More Than a Nurse
Published May 17, 2019
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…
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Shannon’s Story – A Mother’s Day Tribute to Mothers of Medically Fragile Children
Published May 12, 2019
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…
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