Tag Archives: symptoms of rett syndrome

Here’s to a New Year and a New Hope

This will be my last post of the year!   I’m feeling particularly retrospective at this time, this year. Facebook has reminded me on an almost daily basis since November of Katelin’s participation in the Adult trial (Phase II of … Continue reading

Posted in boys with Rett syndrome, Communication, cure, FDA, hope, MecP2 duplication, Neuren Pharmaceuticals, NNZ-2566 trial, Rett Research, Rett Syndrome, rettsyndrome.org, Talking, Texas Children's Hospital, Trail to a Texas Trial, Trofinetide, Trofinetide Pediatric trial, Trofinetide Phase III | Tagged , , , , , , , , , , | 2 Comments

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