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.