Category Archives: seizures in Rett syndrome

One Moment in Time…

To be honest, I had to wait over a day to try and write this post. And still, I start crying; I ramble; I’ve looked at what I’ve written and while to a special needs’ parent it may look coherent, … Continue reading

Posted in America's Got Talent, boys with Rett syndrome, Communication, hope, Kodi Lee, Music, Rett Syndrome, Rett syndrome Awareness, screaming in rett syndrome, seizures in Rett syndrome, Special needs siblings, Trail to a Texas Trial, Trofinetide | Tagged , , , , , , , , , , , | 3 Comments

In the Spotlight!- Colleen English

Every once-in-awhile you meet someone just destined to change your world. One of those people is Colleen. In the years that I’ve known her, her great, big heart has gone from figuring out to provide gift cards to trial families … Continue reading

Posted in Anavex 2-73, IgF-1 trial, Neuren Pharmaceuticals, Newron, Rett Research, Rett Syndrome, Rett syndrome Awareness, Rettland Foundation, rettland.org, sarizotan, seizures in Rett syndrome, Trail to a Texas Trial, Uncategorized | Tagged , , , , , , , , | Leave a comment

Hold the Presses-Trofinetide in the News!

The first publication of the Pediatric Trofinetide trial has hit the proverbial newsstand! Neurology.org has published “Double-blind, randomized, placebo-controlled study of troļ¬netide in pediatric Rett syndrome” ahead of print. So, it’s hotter than “hot off the press.” So, quick cut … Continue reading

Posted in Acadia, anxiety in Rett syndrome, Ataxia, Breathing issues in Rett syndrome, Communication, cure, Dr. Walter Kaufmann, hand clasping in Rett syndrome, Intrepid 2566, margaret brimble, Neuren Pharmaceuticals, Neurology.org, NNZ-2566, Orpan Drug Status, Rett Research, Rett Syndrome, Rett syndrome Awareness, rettsyndrome.org, screaming in rett syndrome, seizures in Rett syndrome, Texas Children's Hospital, Trail to a Texas Trial, Trofinetide, Trofinetide Pediatric trial, Uncategorized | Tagged , , , , , , , , , , , , , , , , , , , , | Leave a comment

Pain is in the Eye of the Believer

As I’m writing this Katelin is into her third month with a cavity that needs a root canal. Perhaps, you are saying to yourself, “My God! How could this mother let her child’s teeth go so long without seeing a … Continue reading

Posted in bone deformity in Rett syndrome, Communication, Neuren Pharmaceuticals, Pain in Rett syndrome, Rett Syndrome, screaming in rett syndrome, seizures in Rett syndrome, Talking, Trail to a Texas Trial | Tagged , , , , , , , | 4 Comments

A Body Bound by a Brain #2

You can feel it, when you’re right there. A quiet rumble at first, but within a blink of an eye, your world is shaking. It’s like time stands still, every second feels like a minute; and then, if you’re lucky, … Continue reading

Posted in Neuren Pharmaceuticals, Rett Research, Rett Syndrome, Rett syndrome Awareness, seizures in Rett syndrome, Trail to a Texas Trial, Uncategorized | Tagged , , , , , | 5 Comments