Category Archives: Death in Rett syndrome

Close is Too Late for Too Many

As we approach the start of the Trofinetide trial, I know that it is going to go by in a blink.  And, there are other trials in different stages of development, each holding some parent’s hope for their child- improvement … Continue reading

Posted in Acadia, Anavex, Avexis, boys with Rett syndrome, cure, Death in Rett syndrome, grief, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, Rett syndrome Awareness, tracy chapman, Trail to a Texas Trial, Trofinetide Phase III | Leave a comment

My Wish to the Stars

Our little community has lost at least 5 girls and one mother to Rett syndrome and FoxG1 since the start of the new year. Facebook is a double edged sword-you watch these children grow, rejoice in new skills or coming … Continue reading

Posted in Death in Rett syndrome, FoxG1, Poetry, Rett Syndrome, Trail to a Texas Trial, Uncategorized | Leave a comment