Race for Grace - Saturday, May 26th 10 AM March 1

Filed under Fundraising, Grace Update, Treatment by Tara | 0 comments

Hello Grace Fans Apart from the continual hills and valleys inherent in life with Grace and Rett Syndrome, life continues to move forward for our family.  Grace has a walker now which actually looks more like an ATV and Sam, Ben and Meg think it is an ATV as they have found unique and spectacular uses for it (without Grace in it of course)!! 

Grace is receiving occupational therapy (OT) twice weekly and PT weekly (in the process of increasing to twice weekly) and speech therapy weekly. We did visit Dr. Khwaja at Boston Children’s Hospital who explained to us that the old theory of Rett Syndrome is that you help the girl be as comfortable as possible (medication), get them into a wheelchair and basically “wait for them to die”.   (more…)