I have been trying to pace myself into the entry of the world of Rett Syndrome since that fateful phone call of Reagan's diagnosis just 4 months ago. You see, my personality tends to be one that becomes very involved, or maybe obsessive is a better word, in my interests. The diagnosis, followed by the birth of our second daughter the next day, has kept me very busy. I didn't want to bite off more than I can chew. However, I think that I have had enough time...it's time to be involved and fight for a cure!
This evening I had the pleasure of meeting a fellow Rett Mom from the Houston area (Kella) and IRSF Special Events Program Manager, Jenni, to discuss an upcoming fundraiser. I am excited to join these ladies, and many others, in planning the 2nd annual Texas Strollothon in October...more details to follow in the upcoming month!
I can not change the diagnosis for my sweet daughter, but I can fight for her. I can not sell our house and give all the proceeds to research, but I can help bring awareness and funding to the cause by asking for help. I can not hear my daughter say "I love you, Mommy", but I can see it in her eyes...and that's what keeps me going. I hope that becoming involved will help me feel like I am contributing to the cure as well as let my wounds heal.
Abby's first visit to Boston for the IGF-1 Trial
4 years ago