How did this happen

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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