Today, in the middle of the afternoon, huddled in the coolest dark corner of our home on an insanely hot day, we officially completed the IGF-1 trial. It was just a 40 minute phone call and 12 pages of online questions, but it was the very last step in a process that changed me to my core.
Just under 8 years ago we first heard the word Rett syndrome and that was a really bad day. We googled it and it was bad. At the time, we were told that all that could be done was intense therapy to maybe slow down the downward spiral that would be our precious little Claire’s life.
When we enrolled in the trial we had little idea what all we were getting in to and it is a good thing, otherwise I am not sure we would have enrolled. Now that it is completely done, I can say without a shadow of a doubt, it is one of the best things I’ve ever done in my life. Better than the marathon for my mom or that amazing time I got to hold babies in Guatemala while they waited for cleft pallet surgery.
I’ve learned more about life, love, humanity and hope in the last 2 years of this trial than the 33 years before it. This process shifted who I am to my core and I am eternally grateful that we had the opportunity to participate in it. Today I know that Rett syndrome is a neurological disorder that is being aggressively studied and that teams are working with every ounce of their being, to make Rettland a place where girls are treated and they get better. It’s not far off. It’s complicated and delicate and I don’t know when doctors will be able to hand out a diagnosis and a prescription at the same time but it is a hella lot sooner than I thought it was 7 years and 11 months ago when I was struggling to breath after the news hit us.
I am bursting with hope and so is Claire and that is the really exciting part for me. She knows that there will be not just downs but ups ahead as well. I am so grateful to everyone across Rettland who has made this possible. It will be hard to thank everyone but I want to thank a few. Thank you to my close friends Anne Marie, Erica and Maren, I wouldn’t have signed up for this without you. Thank you to all of the people at Boston Children’s Hospital that made this happen as well as everyone who ever held a lemonade stand or ran a mile for the Rett Syndrome Assoc. of Massachusetts and rettsyndrome.org as this trial wouldn’t have happened without that financial support. In addition, thank you to everyone who has ever donated or raised a dollar for any of the many fantastic organizations out there changing the future of Rett syndrome; Katie’s Clinic, Frankie Says Fight Rett, Cure Rett, Julie’s Army of Hope, Rett Syndrome Research Trust, Southeast Rett Snydrome Alliance, Girl Power 2 Cure, Magnolia’s Hope and the many others that are doing fantastic things in the many corners of the world.
With so many different forces out there we are making progress and it is freaking amazing. I happen to be able to see it today because in this moment in time, I can look and see change. The landscape today is different than it was 8 years ago and it is different than it was 2 years ago and by different I mean better. Sincerely, from the bottom of my heart, thank you to each and every person who has ever donated or shared or supported because you’ve helped us get here and it’s amazing. Yes we are done with this clinical trial but I’m far from finished, really we are just getting started.