October is Rett Syndrome Awareness Month

It is Rett Syndrome Awareness Month and this holds a very special place in my heart. Last October I received a call from one of Claire’s
doctors, the test for Rett Syndrome came back positive. That call did not change Claire, who she was or what she would be. It gave us an answer as to why. Why had she stopped feeding herself and crawling. Where had our sweet girl gone? We learned that she was in the “rapid destructive stage” and that was the cause of her frustration. Today I am proud to report that she has returned and is in the next stage. Daily she is making progress and surpassing any and all expectations. She is able to use her walker with assiastance and has been challenging herself while standing. Claire has made incredible strides in her oral motor skills and recently told her speech therapist that she was “done” once annoyed with the activity, a word that we have been hearing a lot more of. It is amazing to see Clarie do things that we never knew she would do. I love how she is contributing to our lives and the lives of everyone around her. If you would like to make a contribution to the International Rett Syndrome Foundation on her behalf we would be grateful. You can click here and visit the Care and Cure Cafe to see Claire’s biography and make a toast to her. Thank you very much to all of the people that have supported us and prayed for us along the way. Thank you also to Mr. Mueller, who was able to capture an amazing picture of Claire, a little girl who doesn’t really sit still.

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