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My sister has Rett Syndrome too! She's 23 this year, and was diagnosed in the early 90s.

Here's a question: do you ever want to slap the shit out of the people that call it a "blessing?" Maybe it's how they cope, I just always want to smack them. It's not a blessing; it's a tragedy. No sense in pretending it isn't.

Edit: does she get seizures? My sister has grand maul seizures daily. I never knew if it was a Rett thing or if its just something that she has in addition to Rett.

Edit 2: does your sister love music too? My sister goes insane for music and she walks around with a toy up against her ear that blares music.

That's crazy that your sister has the musical aspect too! PM me anytime if you want to commiserate and exchange some stories/thoughts!

And thanks for doing the AMA...most people try to correct me and say "you mean Tourette Syndrome?" Rett is definitely not widely known about :/

I dunno. It varies person to person and a lot has to do with ones own circumstances, so I'm not discounting that's how some people take it. I don't see how it makes other problems seem trivial except by creating a huge one. It's an extremely tough life caring for someone who needs every minute of your day and its heartbreaking for me at least to think about what life my sister should have had. There's no sense in obsessing about what should have been, but it IS a tragedy to me. There is a whole spectrum of human experience that she will never be able to participate in. I comfort myself with the knowledge that she's unaware of it. I would be a monster to not feel like its a tragedy; I would have traded my sense of fulfillment taking care of her for her ability to live a normal life any minute.

For clarification, I don't live with her anymore. She's with her father.