Ryan Stack (Olathe, KS)

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 these children with Fragile X Syndrome who were currently enrolled in this trial. One mother told me that it was like a switch in their son had suddenly “turned on”, like he came to life. Wow, how amazing is that I thought. So, once our local Fragile X clinic was approved for the trial, our son’s doctor, my husband, and I decided we had to go for it.

My son, Ryan, is an amazing 10 year old who has and is affected by Fragile X Syndrome. Because of having FXS, he has great anxiety that truly runs his life. He usually only uses two to three word sentences which sometimes can be very hard to understand unless you know the Ryan language. Because he has a hard time saying what he wants or how he feels, he becomes frustrated a lot which then would lead into aggression or a meltdown. He has a lot of sensory issues. He really doesn’t like to be touched that much. If you ask him for a hug, and would say “no” or will semi hug you with that “please don’t touch me too hard” defensiveness that his body does. Humming, oh does he hum when he gets too overwhelmed. He is constantly moving from one thing to another, or watches the same scene or same video over and over and over and over. Outside, inside, downstairs, bedroom, car ride, repeat is usually his everyday routine. It is like he is never really satisfied unless he is in the pool swimming.

After Ryan entered the trial and was approved, I was very nervous and excited to see if we were going to see any difference in him. The first couple weeks, I was like there is no way he is on the drug or if he is, it is not enough or this is not the right drug for him. A couple more weeks and visits to the clinic went by. I was pretty sure I was starting to see some changes in him. His speech started to become clearer. He started to use full sentences without being prompted to AND I could understand what he said the first time he said it. I didn’t have to ask him to repeat what he said so I could try to figure it out. He told me once that his head hurt. He has NEVER told me that something hurts. The humming went away and his sensory defensiveness was lowered tremendously.

One time in the car, I noticed him looking at me in the eyes. He was actually looking into my eyes without instantly looking away. I thought I was seeing things, but it would happen again. When we would celebrate someone’s birthday at a family’s house, he didn’t want to leave 30 minutes after being there. He was actually happy and content to be there. His frustration level was small to none which led to little or no aggression which was HUGE. I could ask him to pick up or bring something to me and he would say “OK” and do it. That NEVER happened in the past. He either would freak out about me wanting him to do it or just not do it. And he was super funny. More funny than ever! Most of all, he just seemed SO happy!

The first event that happened that I was positive he was on the real deal was when we went to S.O. swimming practice. We got to the school and all the kids and parents were waiting outside of the pool area in the hall. They informed us that the life guard had not showed up yet and we could not enter the pool area until she was there. We waited 30 minutes for her to show and she never did. For him to not freak out while he had to wait 30 minutes in the hall knowing that the pool was on the other side of the door was a miracle in itself. But when we had to tell him we had to leave, that he was not going to be swimming that evening and he was OK with it, was officially a miracle! I could not believe it! It was truly amazing.

At school, we have always pushed for Ryan to be with his typical peers during science, social studies and specials like music, and PE. But during class time, he would only usually last around 10-15 minutes and would want to leave the room. Trying to do homework was usually impossible most nights. While he was in the trial and I “knew” he was on the drug, school started to see some major improvements. He was not only able to attend science and social studies, but also answer questions about what he learned, and was able and willing to do homework. He was able to give a report in front of his peers in the classroom all about him by pointing to pictures and telling his peers about them! His academics started to greatly improve and he had little to no aggression at school. His teachers could not have been more proud of what he was accomplishing.

One thing that I will never forget was how his hug changed. Not only was he willing to hug you, he would run and jump in your arms and hold on tight. That was something that I had never felt before this trial. It is something that I will always cherish. It is something that no longer happens. We are now back to not knowing when the next aggressive act or meltdown will come.

My heart literally aches for these children that now have to go back to what it felt like before Arbaclofen, something that gave them a better quality of life. The Fragile X community is reaching out for help. Thank you for reading our story.