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 ...
By Carolyn Jackson
Cara is the 3rd and youngest child in our family with Fragile X Syndrome. She was diagnosed at the age of 5, her twin sisters at 14. It was a bittersweet day in that we finally got a name associated with ...
By Lori ArmerWe arrive at a hotel in Nags Head, NC (2 hours from home). They have an indoor pool and they are right on the beach. Jonathan will love it! We made one BIG mistake, we arrived EARLY. Check-in is not for 2 more ...
Jonathan Armer (Newport News, VA)
Jonathan A., STX209
One story, One voice
By Sally Nantais
How can one story convey the hopes, dreams or fears and sorrows of not only one family’s journey but many families journey? I’m not sure I can do that but I know I’m not alone. ...
Austin Nantais (Wyandotte, MI)
STX209
By Theresa LaRosa
Our son Christopher was diagnosed with Fragile X Syndrome when he was 2 1/2 years old. He is nonverbal, and has always been faced with challenges due to developmental delays and behavior issues. We ...
Christopher LaRosa (Barnegat, NJ)
Christopher, STX209
By Dr. and Mrs. Arlo J. Courter
Our grandson, Jacob Harrison age 13, was enrolled in the STX209 trials at Duke University until the trial was suspended. We can give only our observations of the effects of the drug on ...
By Rene Katkowski
Though we had been identifying and working on Serafina's many developmental delays since before her fourth birthday, it took until just after her sixth to find Fragile X Syndrome. Sera lives with the full ...
By Deanna Acree
I am writing this in a plea to help all the families I love. Families I am friends with and have dinner with, families I have never met beyond an email, families I know just from Facebook. I may have never ...
By David & Sharri Lungarini
We are parents of a special little 4 ½ year old boy named Wyatt. He began receiving intervention services in 2009. The level of services and the amount of people we worked with increased ...
By Kara M. Frech
Both of my sons, Andrew (9) and Jason (7), have been participating in a clinical trial for STX209. Andrew has been involved since the Fall of 2009. We have seen an extremely positive difference in verbal ...
