I am trying to keep on trucking today and find the positives. In the last 24 hours I have heard of 2 Rett Angels passing away and also a newly diagnosed Rett Angel at 20 months. My heart is breaking for all of these families. The news of the passing Angels seems to rip the band-aide of my healing wound. Its moments like this that I want to give up hope. That I am quickly reminded that my dream of a cure might not happen and that it could be my daughter passing away so young. I hate Rett Syndrome and the pain that it causes our children.
I am going to focus on my 10 minutes with my sweet angel last night and not worry about tomorrow, it's just sometimes easier said than done.
Abby's first visit to Boston for the IGF-1 Trial
3 years ago