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Category: Parent to Parent

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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Paris, First and Foremost
Published March 29, 2019
“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. “…
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Changed for the Better
Published March 22, 2019
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 appreciate what we are given. We …
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The Joys and Fears of Parenting a Medically Fragile Child
Published Jan. 25, 2019
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 I was scared as well because of the iss…
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