Ian Carver (Henrico, VA)

By Kristin Dochterman Carver

My son is 11 years old. He is in fifth grade and will be attending middle school next year. He has a great sense of humor and loves Sponge Bob and PBS Kids. He also has great anxiety in new situations and struggles with counting to 20. Fragile X Syndrome affects his life, and ours, in so many ways. It has become our “normal” but about six months ago we were given a chance to try for a new normal.

A few days ago, that chance was taken away.

We heard about STX209 through our fellow FX parents on Facebook. Their children were seeing positive changes. The results varied, but they all appeared to be good. We decided to investigate further. We tried to get in on a study at one site, but it fell through. Then another opportunity came up at Duke University, and we got in! We had our first visit on February 5. It was a long and stressful day. My son is a textbook case for social withdrawal, and I knew we would have no trouble getting him into the study. We didn’t. We were excited for our next visit on March 5 when he would begin the dosing.

And then things changed.

We received a call that said we may not be eligible to receive the drug after our participation in the study was complete. It wasn’t certain either way. We decided to go ahead and take a chance.

We will never know for sure whether Ian was on a placebo or the medication itself, but I believe he was receiving at least a low dose. During his time receiving the dosage, I started to see the child that I know he can be. He was more relaxed. He spoke more, especially at school. His teacher and speech therapist noticed positive changes in behavior and speech. He was happier, and isn’t that what every parent wants most for their child?

Right before our last visit to Duke, we received word that Ian was definitely not going to receive the medicine after our participation was done. We were naturally disappointed but not surprised. I took solace in the thought that the trials were wrapping up and the push for FDA approval would be the next step.

And now, we don’t even know if that is going to happen. And my heart is breaking for the other families who have been doing this for years and are now having it taken away.

So, we will go back to our normal and pray that somehow, some way, we can find a way to get STX209 to the children who would benefit from it so much.