|Duncan and crew taking on one of many challenges to raise awareness for Rett Syndrome.|
There are many things about Rett syndrome we all wish we could change, but there are also some things we already can.
Somewhere along the line, somebody thought that because Rett syndrome affects the brain, it must affect intelligence. But, now we know that the intelligence of people living with Rett syndrome has been severely underestimated.
It’s not only that we have completely misjudged their intelligence, but also how we have been taught to make a negative the starting point of every conversation we have about Rett syndrome.
Instead, like we do with other children, we should choose to believe in their potential with no limits. The sky's the limit; they can reach for the stars.
It’s been 5 years since I was introduced to Rett syndrome.
My first mistake was to Google it, my second mistake was to believe what I read. As soon as I did, I started building ceilings.
I read that my goddaughter Carys would never walk, or talk, that she would have breathing problems, seizures, weight gain problems, scoliosis, osteoporosis and most importantly I read that Carys would never exceed the intelligence of 7-year-old girl.
Those things became the foundation of the ceiling I was building. It was incredibly low and it blocked out the stars.
I then discovered Rett had been reversed in a lab, a cure had been found. All we had to do was raise as much money as we could. I’ve run countless races now, participated in more Tough Mudders than I have fingers. I’ve climbed the highest peaks in Britain and I’ve completed an Ironman. I was part of a group that formed a charity to try and help raise money for this cure.
My world exploded. Suddenly Rett syndrome was more than just Carys, it was filled with loads of new people: parents, families, friends and most importantly, other people living with Rett.
When I found out that some of these people were communicating, reading and even controlling their lives, it was a dawning moment for me; the light switched on.
While the future of Rett syndrome is very, very important, people living with Rett syndrome right now are more important.
There are things we are fighting to change, but there are also things we can change right now.
These people are smart, they’re chock a block full of amazing, unbridled, exciting, raw potential. They are funny, they are stubborn, they are more tenacious than any Olympic athlete. Our role is to help them break through those ceilings and see the stars. To be the stars.
This is why I fight Rett syndrome, because I believe that goal is attainable. I choose to surround myself with people who break ceilings and reach for the stars. I believe in the people who are fighting to give the girls the tools to empower them and equip them so that someday, they will be the people leading the army.
I’m now lucky enough to be the Godfather of two people, and share in the lives of countless other girls (and a few boys) living with Rett syndrome. Whilst they live with it, it doesn’t define them. Carys and Melody are unique and most importantly, I bet neither of them have built a ceiling for me.
From all of us at Girl Power 2 Cure and RettGirl.org, we thank you Duncan for your never-ending passion, commitment, and amazing sense of fun which helps our entire community strive to be the best and do the best for our girls.