Category Archives: Music

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

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

The Long and Winding Road leads Up to the Mountain, so I’ll try to Let it Be

Yesterday was a blow; Duncan Millar, calls it a “blip” and in the end, he’s right, as are all the other people who jumped in to say all the positive things still going Neuren’s and our way- Fast Track, Orphan … Continue reading

Posted in Music, Neuren Pharmaceuticals, Rett Syndrome | Tagged , , , , , , , , | 1 Comment