Andrew & Jason Frech (Berwyn, PA)
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 skills, social skills, agitation and cognitive ability in him. Before the trial, Andrew would want to play with other kids and would grab at them from the peripheral. Now he asks to joins in on the games with the other boys at recess and gets invited over for play dates. This kid, who wanted to buy lunch at school like the other kids but did not know he needed to use his words to ask, now requests to have “pokemon cards” because he wants to trade with his friends. This is the same child who would once fall to the floor and tantrum at us at the word “no”, now comes back at us and asks “Why not?” like any typical child. A child for whom speaking was an issue just gave a 7 minute oral biography in front of his class. His reading has progressed to a 2nd grade level. Math while still an issue is doable and progressing.
Jason has been involved since Fall of 2011 due to age restrictions. For him, the effects have been in the social, verbal and cognitive areas. He is more interested in what his peers are doing. He wants to compete in all sports. He plays interactive games and verbally jokes with us. He tells us what he wants or dislikes. If he has an ear infection he is finally able to communicate this to us, not go on for a week with miserable behaviors. He is able to get up and perform in class shows, where in the past he would have had a tantrum and taken off his clothes.
While these are all positives, this medication is not to be confused as a cure, it simply makes the quality of life for my boys a whole lot better. They are much less defensive about the world around them. It enables them to be an active participant in it.
I fear much regression at the discontinuation of the trial. There are currently no medications on the market for Fragile X Syndrome. I ask your help in funding the extension so that we do not see the regression and loss of skills.
Thank you for your time.