When I first met my good friend Kori, co-founder of the RSRT UK, she brought me to tears when she said that “someday, a diagnosis of Rett Syndrome will be good news.” This replays in my mind over and over and over as I think about diseases that used to be bad news like Rett Syndrome is now. Spina Bifida used to be 100% disabling. Now, they can do surgery on babies in the womb to make them whole before they ever even enter the world. Meningitis used to be incurable. Hypothyroidism used to be incurable. Diabetes also killed. I have hypothyroidism. The doctor didn’t say, “it’s bad news. You’re dying”. He said, “Good news. take one of these pills a day and you’ll be fine.” I’m sure that when epidemics of smallpox were killing by the thousands, it was unimaginable to believe that there would ever be a time that we could say “that was back then before smallpox was eradicated.”
Someday, Rett Syndrome families will look back on us in 2011 – they might even read this blog – and they’ll say “oh wow that was back when there was no cure”.
So just like Kori, I dream of the day when doctors will say “good news – your daughter has Rett Syndrome. And there’s a cure.”