"Rett syndrome, originally termed as cerebroatrophic hyperammonemia, is a neurodevelopmental disorder of the grey matter of the brain that almost exclusively affects females but has also been found in male patients. The clinical features include small hands and feet and a deceleration of the rate of head growth (including microcephaly in some). Repetitivestereotyped hand movements, such as wringing and/or repeatedly putting hands into the mouth, are also noted. People with Rett syndrome are prone to gastrointestinal disorders and up to 80% have seizures. They typically have no verbal skills, and about 50% of individuals affected do not walk. Scoliosis, growth failure, and constipation are very common and can be problematic."
|Melia and friends at one of the Rett Syndrome conferences this year|
|Tanis ran the "Disney Princess Half Marathon" this past February to raise funds and awareness|
One of the best parts of this run is that it can be done ANYWHERE in the world on ANY day in October! You decide when you race - then do it:) So who wants to do something good for their bodies, while helping find a cure? If there is interest in running as a group, contact me and I'll set something up!
Great blog! You have described Tanis as I know her, too....an incredible mom. She's a wonderful supporter of Rett girls everywhere, but she is an especially fierce supporter of sweet Melia! I'm in. I'm registered. I can't wait!ReplyDelete