Family support

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[…]

Flying to Texas

The airport was easy enough.  All she wanted to do was run around.  The irony is not lost on me that were going to get her evaluated by Rett specialists and all she wanted to do was run, considering there’s a high likelihood that someday she won’t be able to at all. But she did[…]

Diagnosis

Up until today we thought we were dealing with apraxia.  We thought with intensive speech therapy she’d get better.  Up until today we thought we were on the road to recovery.  Instead, we learned we’re on a much worse road – the road from Rett.  Rett Syndrome is a postnatal neurological disorder that leaves many[…]