"Rett syndrome, originally termed as cerebroatrophic hyperammonemia,[1] is a neurodevelopmental disorder of the grey matter of the brain[2] 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.[3] People with Rett syndrome are prone to gastrointestinal disorders and up to 80% have seizures.[4] 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!
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