A year before Maggie was diagnosed, there were no treatments for Rett Syndrome.
Today the Rett Syndrome Research Trust announced they were funding two additional clinical trials, bringing the total to about six. Six is a massive number in comparison to zero. It’s an impressive accomplishment for all of the scientists and families who have been pushing to get us to this point. That said, there’s no guarantee that 1 of these 6 will be effective treatment or will even clear FDA approval. Which we try not to focus on.
But, when the odds are a 1 in 10,000 chance your child will end up with Rett Syndrome, it seems like long odds that your child would ever experience such a thing. So when it happens, it seems a lot like bad luck. I look at these treatments as a 1 in 6 chance that one of these trials will prove effective.
I think all Rett families are owed a little luck and hopefully we can come out on the winning side of this 1 in 6 opportunity. Thank you to the Rett Syndrome Research Trust, as well as Rettsyndrome.org for continuing to fight to find the answers we all so desperately seek.
I’ve made way worse bets than 1 in 6 in my life. Every now and again, I’ve won those bets.
Here’s the link to the specifics if you want to get into the nitty gritty: