Today the Rett families are mourning the loss of another child who lost their battle to this monster. Sweet little Aidan was only 3 years old. This is the second Rett child lost in the last couple of weeks and our hearts are all very heavy and sad today.
I got the news of the first loss the weekend after Thanksgiving and I have been holding my breath ever since. I have only been part of the Rett community since Reagan's diagnosis in January but it seems to me that the passings always happen in clusters. I was hoping this time would be different. The news has stopped me in my tracks, made me hold my little ones longer. It puts that doubt in my mind again about Reagan's health, questioning how long we have before this horrific disorder causes major complications. My heart goes out to both of these families.
Abby's first visit to Boston for the IGF-1 Trial
3 years ago