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Patient Stories

A total of 181 posts are filed under Patient Stories
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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
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Battling a Colloid Cyst of the Third Ventricle
Story by Wendy Shores. In 1983, I gave birth to a son through an emergency c-section, who was born with Angelman Syndrome. That, in itself,… Continue Reading
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Loeys-Dietz Syndrome: Learning and Loss, Awareness, Education and Advocacy
We had never heard of Loeys-Dietz Syndrome until it was discovered to be the cause of death for our 18-year-old son, Ryan. It happened on… Continue Reading
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Life With Lowe: Going Social to Show More Than Just a Disease
I am a pretty private person, however, when it comes to social media, I’m like a lot other parents who brag on their little ones. We all… Continue Reading
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Let The Love Guide You: One Mother on Caregiving for Her Child with Tuberous Sclerosis
I fell in love with her the moment I saw her. She lay nestled in my arms and smelled so sweet (a newborn’s perfume.)  I saw so many… Continue Reading
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“My Beautiful Mystery Baby” A 7q11.23 Duplication Diagnosis
I can remember like it was yesterday knowing that something was different about my Chloe. From the day Chloe was born she was a mystery… Continue Reading
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35 Years With MPS 1
You’ve been a part of who I am since birth, a disorder so rare there are only, roughly, several hundred of us here in the U.S. A… Continue Reading
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