Ok, so maybe you all know about it already but I just saw a beautiful mom, Angela Martin audition on American Idol (yes, sadly, I’m a fan of the show) and she did it all for her daughter who has RETT SYNDROME!! My boys were so excited to hear about it on TV. The show profiled her daughter and talked about Rett and everything.Â
Get the word out…we gotta support this gal ~she’s really talented and her daughter is just adorable of course.
-Tara
Happy New Year to all of Grace’s loving friends old and new!
Grace is still fighting a great fight. The bottom line is she’s still here. One year ago, I did not think she would even be alive to be honest. She was weak and sickly and had stopped walking and eating. Today she has good days and bad days. Some days she wins her battles and some days she loses. I’ve come to view Rett Syndrome as a very slow moving but powerful train without any breaking system. It’s not speeding ahead at full force but it is moving. Although Grace is still walking and moving with strength she seems to have lost the connection from her brain to her right hand. It’s not the strength of her hand that is lost. It is the ability to control her hand and use it in a functional way. The communication between brain and hand seems almost completely severed. The hand seems to operates independently. That’s the update on Rett. Life with Grace as an active, jumping, grabbing (even with left hand only) is extremely challenging. There are dangers and messes waiting everywhere. As she gets taller, life around here gets more and more challenging. I just wish I knew why she cries all the time. It’s by far the hardest part.Â
Grace is attending Narragansett Elementary School along with her siblings. (more…)