When our daughter Claire was diagnosed with Rett Syndrome in 2007 we were given paperwork for Make A Wish and a disabled parking permit.There was no talk of treating it, just managing the symptoms, with very few resources. A few weeks later a major scientific breakthrough was published, Rett Syndrome could be reversible, as evidenced by work with some lab mice.
Ever since, our little community has been fundraising like crazy, to find a cure. There are multiple organizations across the globe, funding different research projects, trying to find a way to free the individuals living with Rett Syndrome. I have had the privilege to be involved in a few different clinical trials for Rett Syndrome through my work with Rettland Foundation and as a mom.
I’ve learned a lot in that process. My biggest take away is this:
The cure for Rett Syndrome is already here.
I realize that sounds like insanity, let me explain further. For our family, the cure for Rett Syndrome came in the form of living as well as we could.It came to Claire in the form of friends in middle school, who included her as one of their own. The cure for Rett came as Claire participated in clinical trials and she was able to contribute to future treatment options. The cure came to us as friends planned fundraisers and donated to further the research, because they saw Claire.
The cure is you. It is the people who choose to show up in Rettland and participate in the life of an individual with lots of challenges and even more potential. Rett Syndrome can make the best of us feel powerless, but it is just not true. We can all make a big difference through what might feel like small, ordinary things. Making dinner for a tired special needs mom or organizing a basket for a raffle, taking the time to get down and talk with somebody who is non-verbal and living in a way to include them, those are the cures we have access to now.
Don’t get me wrong, let’s also pursue new treatments with everything we have. It is in the trying, in the living well, that we can find a cure every day. I know there is a party coming soon, when we have medications designed for Rett Syndrome, and I will be there. I don’t feel like it came too late for Claire. Her cure came in the form of living bravely and being seen by the most incredible people.