Our efforts to be noticed have given us a small victory today. While it was not a response we were hoping for, it is a response nonetheless.
Dr. Severin Schwan Responds: An Open Letter to Parents
To read the original ...
We will be following up with the children as they titrate off the medication and resume life without it. This is the first update to Harry’s story, see his original story click here: Harry Zucker. By Jeanie Calenoff
How ...
By Jillian Ransom
Blurry visions of traffic lights, uncontrollable sobbing, and a lifetime of grief and guilt is was I recall while driving home after receiving Bryce’s FX diagnosis 4 years ago. Bryce would be one year ...
We will be following up with the children as they titrate off the medication and resume life without it. This is the first update to Rhett’s story, see his original story click here: Rhett Murphy.
By Christina ...
By Corry Miller
For the first time in his life, Arbaclofen gave him the ability to hug us and tell us he loved us. His coping skills were better in regard to transitioning. He was less shy. He was less emotional. He ...
By Brooke Stack
After months of talking to other mothers, reading several stories and attending doctor’s lectures, all I heard about the STX209 drug trial is how amazing this drug was. I had heard how much it had done for ...
We will be following up with the children as they titrate off the medication and resume life without it. This is the first update to Ayden's story, see his original story click here: Ayden AbouElSeoud.
by Cortney ...
Our Fragile X journey began 3 years ago with the official diagnosis of Fragile X. We were led in the direction of Fragile X when an OT working with Liam, asked if he'd been tested for Fragile X. I googled Fragile X the ...
