I can’t take it, the waiting. The waiting while Claire sleeps and tries to recover from the dramatic events that ravaged her body yesterday. Waiting to hear from Boston for when we get to go back for our screening visit and start the trial. And as silly as it seems, waiting for Chloe’s excitement as we pull up to Disneyland on Saturday, she has no idea and keeping the secret from her is nearly killing me. I’m waiting to see my mom there, who I haven’t seen since she started treatment. I’m anxious to see her stronger as a direct result of a medication that wasn’t available prior to a few months ago. There is so much good that is almost about to happen but it’s today. I am tired. It seems like the whole world is cranky. The lady at the grocery store, the jerk that cut me off in traffic, I think there’s a lot of tension with the holidays and a lot of people are a little on edge. That is why I cannot wait any longer. I have a secret to share. I am sure I should wait to have it all organized. I shouldn’t put it out there without the website built and all of the details finalized. But I am going to because I need a win. I need something positive. The best thing to fight darkness is with light. So here goes.
I am convinced that we now live in a world where there are in fact trials for treatment for Rett Syndrome. With time there will only be more. Everyone needs to be able to access these trials but costs often keep some families from participation.
I am starting the Rettland Foundation. The mission of the Rettland Foundation is to prepare and support families as they obtain treatment for Rett Syndrome.
I want to help families get to treatment. I can do this only because of the amazing support of our community and friends that have joined us here. I am silly excited. What I am anticipating most right now is seeing the joy as people give to this. The joy and relief of families as they are financially supported and able to go get TREATMENT. I can’t wait to see the research that comes out of completed phase 2 trials.
I don’t know all that 2014 will hold but it does look like it will be an epic adventure and I am up for it!