awareness

I’m Not Speaking…

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October is Rett Syndrome awareness month…in honor of my friend Colleen and her little girl Claire I am going to take an hour a week this month NOT speaking to raise awareness… What is Rett? That is a great question…I have never heard of it before I met Colleen I had no idea…In an interview at Chris Morris’s blog Colleen described Rett as this “Rett Syndrome is a rare genetic disorder that primarily affects girls. It limits how the synapses in the brain connect. This leaves them with severe motor challenges. Most have little purposeful hand use, are completely non-verbal and require assistance if they can walk. Along with the severe apraxia comes scoliosis, seizures and GI issues. Not every child with RTT has all of those however they are common across the population. Girls with RTT like Claire are born healthy and develop typically for the first year. We had no idea that anything was amiss until she was 14 months old. After batteries of testing, blood, urine, MRIs she was diagnosed 2 weeks before she turned 2. She fed herself birthday cake that year and continued to feed herself until Thanksgiving. Thanksgiving dinner, 2007 was the last time she …Read more