It’s a well known fact, change is hard. Right now we are on the verge of some major changes. When Claire was 2 we had no control. The changes involved building a staff to come in and help. There was no treatment. There was little science. Her brain was changing and we blindly did our best to work with that.
The changes slowed with time and we started to try to catch our breaths a bit. Then suddenly, there was the trial in Boston and that has changed everything. It is nothing short of crazy to make 7 trips to Boston, spend 45 nights in a hotel over 3100 miles from home all while giving your vulnerable child injections of a mystery substance and trying to pay close attention to any changes.
We have met some amazing strangers and experienced life in a new way that I can only describe as really awesome, but it’s been hard. With this process we have become very isolated, I miss my Rett community. Part of being in the trial means I can’t go into the forums and ask if anyone else is seeing what I am seeing. I can’t talk with the other people in the trial and ask if what Claire is experiencing is their normal too. In a few weeks we will complete the trial and be given the opportunity to go on the open label medication.
This will be a huge change. This isn’t a treatment for seizures or low weight, this is a drug that is being tested to treat Rett syndrome. This changes the game entirely. It’s crazy and awesome and scary. I’m trying to figure out how we will go on, living in Rettland and not talking about how Claire is doing, but we will find a way.
In less than a month we will make our final trip to Boston for the IGF-1 trial. While Claire was our driving force, we are doing this for everyone in Rettland. We want treatment available for everyone and we really believe that this is a step to making that happen.
We are grateful for those of you that have been with us in spirit on this crazy, awesome adventure. If you would like to send some our encouragement our way it would be deeply appreciated. Our mailing address in Boston:
Rett Syndrome Research Program BCH3410
Boston Children’s Hospital
300 Longwood Ave.
Boston, MA 02115-9980