Grace for Rett » Grace's Life with Rett Syndrome

Someday, Rett Syndrome will be good news

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.”

Christina Evangelista - September 15, 2011 - 12:19 pm

Thank you for your post. I stumbled upon it while searching Rett. My daughter, Brianna (age 3), was diagnosed with Rett a month ago. We are all still trying to process what this means. Bri can still walk, feed herself (w/ a lil help), make eye contact, and says a few words, and almost potty trained.

I see different posts and videos about Rett and can’t help but cry for the future. Thankfully, this posts reminds me to hold on to my faith in the Lord and to keep praying that a cure is found for our little girls. Thank you. Praying for Grace and the family.

Eylem Selby - September 16, 2011 - 8:59 am

In 2007, shortly after my daughter’s 3rd birthday and coincidently after Prof Bird’s astonishing study results were published, we went to the Rett Clinic in Cardiff with suspicion of Rett. I remember going in there madly hoping to be told she had Rett Syndrome! Well, something was clearly very wrong with her and it had better be Rett than not! When we were told she was not presenting a typical Rett picture and therefore they were hesitant to diagnose her with Rett, I remember coming out feeling very disappointed! This however did not stop us supporting the dream of Rett being reversible in human one day; we believe that the more research is done on Rett, somehow there is more chance for other known or unknown conditions to be discovered, understood and perhaps cured… Since then there has been many discoveries about Rett and there has been improvement on diagnoses test techniques; our daughter was diagnosed with Rett in 2011, age 7.

Jen Dalton - September 16, 2011 - 10:33 am

Thank you so much for sharing this.. My daughter Emma was diagnosed 3 years ago this coming Sunday. We have worked tirelessly in raising funds to make this reality come sooner. Our cure is there… and what a celebration there will be when we get it!

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