Claire's Story

Claire was born Oct. 24, 2005 a beautiful healthy little girl.  She developed well and we were told by her pediatrican to watch out, that she was advanced and might be an early walker. Some time around her first birthday things changed. She stopped developing and accomplishing new feats like her little friends. We went to see a neurologist who said that Claire didn't seem that she was that off and she just needed time. After a new neurologist, a lot of blood work, an MRI with sedation, a genetist, a behavior & develepoment doctor and several very long months we learned that Claire had Rett Syndrome. We learned that with this diagnosis, it was possible that she would not only struggle to gain skills, but that she was in the rapid destructive phase and could loose what she had.  Six weeks later, she fed herself her last meal at Thanksgiving in 2007. When she woke the next morning her hands had aggressively started to wring and she has since depended on us to feed her and hold her cup for her. She is not able to speak even though she has volumes of things that she wants to say. She has learned to walk with a lot of assistance and depends on a wheelchair for when we are outside of our home. Claire is a proud 1st grader and loves learning.  She is an amazing little girl that is a truly inspires.

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