We knew something was wrong with her.  We’ve known for awhile.  We just didn’t know it was this something and we didn’t know it was this bad.  We’re looking at a lifetime of taking care of her unless a cure is discovered and soon.  Right now we’re very scared and confused.  A little angry, probably.  Rett is marked by a more or less typical development followed by a period of regression usually from 6-19 months.  After that, there’s a period of progress.  We’re hoping with all of our hearts that we’re past the regression phase.  That she’s stunted but her case is mild.  We’re hoping it’s not a sentence.  We just don’t know yet.

 

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