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Patient Stories

A total of 322 posts are filed under Patient Stories
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The Day Our World Stopped: Siblings with Rare Disease Provides Emotional Awakening for Mom
by Christina O’Neal Deutsch Penny was born with typical jaundice. She had it longer than normal and we were sent home on the assumption… Continue Reading
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Scary Facial Movements in Young Infant Were Early Alert for Parents
Emma was born on March 20, 2015 via c-section (planned-a repeat) after a healthy and normal pregnancy. She seemed to be a perfectly healthy… Continue Reading
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Woodlands Teen Overcomes Rare Disease to Walk Again
Brooklyn Brumfield was 16 when she was given a grim prognosis. She would likely spend the rest of her life in treatment and would need… Continue Reading
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Make-A-Wish Makes Superhero Dream Come True for Boy with Langerhans Cell Histiocystosis
It’s not every day that superheroes team up to welcome a new member to the club. Meet Silver Sword, a member of Teen Super Corps, the… Continue Reading
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A Return From the Dreamland of Narcolepsy: Treatment Plan Works for One Mom
My symptoms for Narcolepsy started when I was a child. I had terrible nightmares, I slept walked and carried on conversations while… Continue Reading
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Laughing it Off, One Dust Bunny at a Time: A Family Full of Rare and Genetic Mystery
In our house, we often don’t have the energy or ability to tackle the daily tasks that make us look like a responsible and disciplined… Continue Reading
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My Favorite Reasons to Never Give Up
by Alisha Hiebert Ever since I was little, I knew I was different. I wasn’t allowed to eat the same food as the other kids, I was fed… Continue Reading