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Patient Stories

A total of 187 posts are filed under Patient Stories
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
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
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
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
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
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
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