Category Archives: screaming in rett syndrome

A Body Bound by a Brain #3

Oh, don’t us parents, all of us, just get so excited when our babies pass milestones- the first smile, the first laugh, the first time rolling over, the first step, the first word. The first word. That brilliant first word, … Continue reading

Posted in anxiety in Rett syndrome, boys with Rett syndrome, Communication, cure, Neuren Pharmaceuticals, NNZ-2566 trial, Phone, Rett Research, Rett Syndrome, Rett syndrome Awareness, rettland.org, rettsyndrome.org, screaming in rett syndrome, Talking, Trail to a Texas Trial, Trofinetide, Trofinetide Pediatric trial, Uncategorized | Tagged , , , , , , , , | 1 Comment

October Siblings

This post, from three years ago, really struck a chord in people. It was the highest viewed post ever. And, the most shared. Rett syndrome Awareness is not just about Rett syndrome, it’s about the families who love them…. One of … Continue reading

Posted in anxiety in Rett syndrome, boys with Rett syndrome, Rett Syndrome, screaming in rett syndrome, Uncategorized | Tagged , , , , | Leave a comment

You scream, I Scream (on the inside)We all just SCREAM!

See this picture here. This is our life, a roller coaster, but our kids are not screaming because they think it’s all fun and games and neither are we. I’ve seen a lot of post lately, from new parents and … Continue reading

Posted in anxiety in Rett syndrome, Communication, Rett Syndrome, screaming in rett syndrome, Trail to a Texas Trial, Uncategorized | Tagged , , , , , | 2 Comments