Tag Archives: special needs parents

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

Raise Rett Syndrome Awareness

I’ve had my mind on other things, so somehow this escaped me, but today there is an organized push to raise Rett syndrome awareness, through #rettsyndromeawareness While we do devote the entire month of October to Rett Syndrome Awareness, it … Continue reading

Posted in boys with Rett syndrome, chan zuckerberg initiative, Communication, cure, Education, Fragile X, fund-raising for rett syndrome, Intrepid 2566, Neuren Pharmaceuticals, Newron, Rett Research, rettsyndrome.org, sarizotan, TBI, Trail to a Texas Trial, Trofinetide Pediatric 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

A Note for New Rett Parents

These are my thoughts, others may have different opinions. You’ll find that a LOT! We don’t all agree, but that’s ok. So many families, religions, cultures etc. how could we? But for me this is what I would tell you. … Continue reading

Posted in Communication, cure, hope, Music, Rett Syndrome | Tagged , , , , , , | Leave a comment