Ten years ago, today, Katelin proved to me that there was hope-the war against Rett syndrome could be won. Hope is a powerful thing. When I was young, I read a story about a POW in Vietnam who had sewed an American flag out of scraps, and I can only imagine how much hope that act of defiance gave to those men. Stitch by stitch, beatings, stitch by stitch again. I’ve thought of that story often, when life has been hard in my 60 years, because Freedom is cause for hope; believing that whatever torment, burden or tragedy is not going to last forever, and you will one day be free is sustaining.
Today, ten years ago, was day two of her participation in the NNZ-2566 trial and her drawing had drastically improved from the day before and I believed. I believed that we would one day be here- with an approved treatment for Rett syndrome, that Trofinetide (Daybue) would change lives, that it would reach into the depths of our children’s brains and stitch by stitch repair their brains and set them free.
I created this blog to share our journey, however it turned out, so long ago. I could never have guessed in my wildest dreams the hope people tell me it has given them. I am grateful that Katelin and my words has given to others what Dame Margaret Brimble and Neuren gave to me. It’s been a priceless piece of the crystal of happiness. In the words of Priscilla Leonard, “happiness is like a crystal, fair and exquisite and clear, broken in a million pieces… learning ever to be thankful, though their share of it is small; for it has so many pieces no one ever finds them all.”
All I ever needed was a few small pieces, but Dame Margaret and Neuren handed me such a big piece that imaging the beauty of the whole of it was easy; it dazzled in my mind, I cried from the sheer, staggering size, light and the colors that prism made. I could hold hope, letting it flow through my fingers like sand and catch it again in my other hand; I could throw it in the air like glitter or like the fluttering, gold confetti when someone hits the golden buzzer.
We aren’t “there” yet. Not everyone benefits and that hurts my heart. Some did not live long enough to get a chance, that hurts my soul. But we know it’s possible to be “freer” and that is better than not free at all. Stitch by stitch, scrap by scrap, Hope is created by perseverance in the face of daunting odds, whether on your own or others on your behalf, Neuren and Acadia have proven to be stalwart stewards of that hope.
Every trial, every dose, every test, needle stick, side effect and moving forward is in defiance of Rett syndrome. The Rett community is one full of those “not faint of heart”, we have the courage to hope and that makes us powerful beyond any words I could ever pen.
Trail to a Texas Trial 
How could her doctor possibly know? I say your doctor is an idiot and is not paying attention to the incredible stories coming out of the United States. It appears they would rather be ignorant than give people hope- it may not help your daughter, but it might. Babies are learning to walk, children are relearning how to walk; parents are hearing words, children AND adults are using cups and holding on to their bottles; they’re using they’re hands; those who use eye gaze are getting faster, more accurate. Personally, if my child’s doctor told me I was wasting my time waiting for something that might help my child, they would not be my child’s doctor. I waited almost 10 years for it and it was worth every second.