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Apparently the Rett family support system is very good.  And it should be.  It needs to be.  With so few families going through this, any connection is a much needed exercise in shared experiences.

I reached out to my local contact through rettsyndrome.org and she got right back to me.  I didn’t get answers and wouldn’t expect her to have any, but talking to someone who has been staring this in the face was immensely helpful.  I wish no one has to go through this at all, but it’s good to know we won’t have to go through it alone.

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