The phrase among our small Rett community today has been, "dare to dream" as exciting news on the research front has been announced by IRSF! The news came on a day when I needed a glimpse of hope, something to remind me that it is okay to dream of a cure for my girl.
I have learned that one of the many stages of grief is acceptance. It does not mean that I have to like Reagan's diagnosis, but on most days I go about our daily life and accept our new reality. It has taken about 2 years to get to this point. There were many days of crying over lost dreams for my daughter before I came to terms with her diagnosis. So it is a rare day lately that the "what if's" get me down as I try to keep those thoughts out of my head. But there are still days that it hits me out of nowhere and my heart breaks for my baby girl and last night was one of those moments. I was putting her to bed and just became incredibly sad and the tears started flowing.
Today the tears were for a different reason, they were for hope after reading this news update about the possibility of an upcoming clinical trial that will help children with Rett. Here is the link: Rett clinical trial information.
Abby's first visit to Boston for the IGF-1 Trial
4 years ago