I've often heard fragile x described as having the sound of a vacuum in your head. Consider going through life daily with that sound. Attempting to speak. To walk into large rooms full of people. Imagine how difficult it would be and how easily you could become frustrated. Imagine then that there was something you could do to shut that noise off. That is how I look at arbaclofen - as an off switch for that constant noise in Ayden's head. Now we have to turn that switch back on. Devastated does not even begin to describe the emotions running through me. Terrified. Worried, Overwhelmed. Sadness. And tears...lots of tears.
"We regret to inform you that Study 209FX303 [An Open-Label Extension Study to Evaluate the Safety, Tolerability, and Pharmacokinetics of STX209 (arbaclofen) in subjects with Fragile X Syndrome] is being terminated immediately. The closure of the study is due to resource limitations at Seaside Theraputics, Inc., and is not related to any known safety issues in patients dosed with STX209."
You have seen our journey here. From barely speaking, struggling socially, anxiety issues, and lack of self awareness to a little boy who was making friends, playing with those friends, playing with toys correctly, jumping into new situations with ease, going into loud places, laughing, talking. TALKING. What a difference six months and a little strawberry pill can make.
We were told the open label would be available until FDA approval (or lack thereof). We were told 4-6 months notice if they were to ever stop the open label. Things don't always go the way we expect though, and as of May 31 given just two weeks of notice, we have to begin the heartbreaking process of weaning Ayden from arbaclofen.
I took the night last night to sleep and hopefully feel better today. I don't. It's not fair. The fact that this comes down to funding is just too much. I'm hoping beyond anything else that we don't see regression. That somehow this drug has made lasting connections that will continue. That the drug only supplemented and helped what was already happening with Ayden developmentally. I don't want to lose him into himself. I just can't. I won't. We WILL find something. We will do whatever we can to help him. We always have and will continue to do so.
We have other options for him. We do know he needs something to help him with anxiety and focus. We were at that point when we started the STX209 trial. It was a good fit for us, we didn't have to wean off anything to start the trial because he wasn't on anything. We knew this could happen. It doesn't make this easier.
For now, I need to purge these raw, negative emotions. Then, then I will look to tomorrow.
“You do not need to know precisely what is happening, or exactly where it is all going. What you need is to recognize the possibilities and challenges offered by the present moment, and to embrace them with courage, faith and hope.” - Thomas Merton
Some other parent's blogs that were involved in the 209 trial are sharing their thoughts as well. You may click on each person to read their thoughts. I'll update as I see more.