Tag Archives: fighting rett syndrome

Grieving a Child Gone, yet Still Here

For many parents, I’d almost dare to say all, Life can be categorized as “Life before Rett syndrome” and “Life after Rett syndrome”.┬áMy daughter, Katie, is 24 now. For 22.5 years I have loved the child in the “Life after … Continue reading

Posted in boys with Rett syndrome, cure, fund-raising for rett syndrome, Rett Research, Rett Syndrome, Special needs siblings, Trail to a Texas Trial | Tagged , , , , , | 135 Comments

Poetry Month: Strength Inspired

I thought a lot about what should be the last poem I posted for Poetry Month. Should I go with hope? accepting your lot in life? the poem about the little girl who still counts her dead siblings as alive … Continue reading

Posted in cure, hope, Rett Research, Rett Syndrome, Trail to a Texas Trial | Tagged , , , , , , , | Leave a comment

Boxing Rings and Rollercoasters

First, let me say- Parents of special needs children get sucker punched on a regular basis. Not from schools or insurance companies or any myriad of support systems that are supposed to be there-those are fights we expect when we … Continue reading

Posted in Neuren Pharmaceuticals, Rett Syndrome, Trail to a Texas Trial, Trofinetide | Tagged , , , , , , | 1 Comment