Profile of a Rett Syndrome Girl 25% may never walk at all, and about half of those who do walk will lose the ability at some time. 80% have epileptic seizures, some of which are mild, and some of which are very severe and require multiple medications to control. 100% are at risk to some degree of curvature of the spine. Those with spinal curves over 45 degrees usually have recommended surgery. Most girls need assistance for all activities of daily living: feeding, dressing, toileting. Girls with Rett Syndrome have unusually bright eyes and seem to understand more than they can express. The most severe handicap in Rett Syndrome is APRAXIA, which means that the will to move is present but the child is unable to carry through the movement. Imagine the frustration! Many girls can be irritable, which surely relates to their frustration and inability to communicate their wants and needs. Most girls are very fond of music, which has a calming effect and is used as a tool of communication to reach them.
			The International Rett Syndrome Association offers comprehensive information and the latest news in RS research. The Rett Syndrome Research Foundation is the world's leading private funder of research for RS.