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Patient Stories

A total of 187 posts are filed under Patient Stories
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Melissa’s Rainbow: Her Life with Trisomy 18
Our fifth child, Melissa, was born in 1988 and within hours of birth we were told that she had a disease called Trisomy 18–and was… Continue Reading
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Love for Izzy with Monocarboxylate Transporter 8 Deficiency
Israel was three months old when doctors started to take notice that he wasn’t holding his head up for longer than a few seconds at a… Continue Reading
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Undiagnosed Eli: “We are Not Going to be the Same Family We Were”
Everything started when our third son, Eli, was four-months-old and suddenly collapsed at home. We called 911 and Eli was taken to the ER… Continue Reading
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Twenty-Two with Spinocerebeller Ataxia
Many have often wonder what goes on in a person’s life who has Spinocerebeller Ataxia. I try to live my life like any other 22- year-old,… Continue Reading
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Parents Raise Funds for Maternity Equipment In Honor of Daughter with Trisomy 18
It was on a Friday, the 31st of October in 2014 at 10:11am, Scot and Claire welcomed Ariana Hope Barlow into the world weighing 4lbs 5.5oz.… Continue Reading
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Talynn’s Diagnoses: Bohring- Opitz Syndrome
Talynn was born early on January 27, 2014. At birth she was transported to Children’s Hospital of The King’s Daughters and spent 3.5… Continue Reading
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No Longer Just Surviving: Chiari Malformation Surgery Produces Better Days
I think it’s pretty fitting that I’m writing this post on the day I pick up my cap and gown for my college graduation. Receiving a… Continue Reading