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20/01/2020

Hope

By Deucalion McGregor-Sims

Give me ten minutes of your time and I will tell you how you can literally change the world!

For about 7 years I’ve put myself through some gruelling and painful challenges in the name of curing Rett syndrome. I spent my 21st birthday climbing the world’s tallest mountain. I had no experience mountaineering. People told me I was naïve and arrogant. Clueless to the task at hand. Nonetheless we raised thousands of pounds, hundreds more people had now heard of Rett syndrome and the bar was set! The whole event was a huge success. What next though? How do you top that?

Deucalion smiling his way through 24 hours on a bike

The years that followed I would ride bikes non-stop for 24 hours, I would run marathons with weighted vests strapped to my body, I would abseil down buildings of great height. Each and every challenge I was told I was ignorant, irresponsible, putting myself in danger, setting myself up for failure. So, what did we do? We documented everything, hourly updates on social media, produced inspiring videos to show the naysayers that at Reverse Rett (I’ve recently become a Regional Ambassador) our devotion to helping these children have a better quality of life would always outweigh any pain, strain, or torture incurred. Someone asked me once why I insisted on making every task so much harder than they needed to be and the answer is really simple- all the time we push our own boundaries and overcome our own limitations there is hope for these children to do the same. To come through. To stay well long enough, against the odds, that the geniuses among us will find a cure for them. What hope do we give them if we tell them “I can’t manage that, It’s unrealistic”? When we tell ourselves, and these children “it’s too hard. It’s unrealistic” what we are breeding the kind of thinking that says “don’t run before you can walk” We are forfeiting that child’s hope. To that, I say no, I will run. And when I can’t run I’ll walk. And when I can’t walk I’ll crawl. I absolutely will crawl that cure over the line if I have to.

The great thing about showing such dedication to a cause is that it becomes infectious. Friends and family began committing to their own events for Rett- and that’s where the true magic lies. Now people around me are also raising money and awareness.

Kayleigh Thomas – Hope. Click to stream on Spotify

Then I met Kayleigh Thomas, a musician with such talent it’s scary. One day I asked Kayleigh how she would feel about writing a song about Rett Syndrome from the perspective of the child. She vaguely acknowledged the idea before moving on. I didn’t think she gave much thought beyond that. The next day she came back to me with a fully written, recorded and edited song. “Hope”. And it was perfect. Every instrument, vocal, and sound is performed and created by Kayleigh exclusively. For her, it was about more than just highlighting what Rett is, but rather exploring what it really takes to live with the condition and I truly hope you feel that too when you hear it. Kayleigh is donating the profits from the song to Reverse Rett so please stream it on Spotify, it’s also available to buy on iTunes.

You can watch the video for ‘Hope’ HERE

So, what am I talking about when I say you can change the world? When I was a teen I met, by coincidence, a beautiful young girl- Harriet. I watched Harriet taking her first steps at a young and hopeful age. I then met her again a few years later. Only this time Harriet had been diagnosed with Rett Syndrome. She was wheelchair-bound, she couldn’t speak, and she had very limited functional abilities. Her whole life had been changed in a way that no parent would choose. When her mother explained to me what Rett Syndrome was and how her life would likely proceed due to the lack of awareness around Rett Syndrome it was a very simple decision for me to act. To bring about change. To get a cure, fast- so that Harriet could lead a brighter life. And it is happening right now. More and more people are hearing about it, learning about it. Devoting their efforts to a cure. I implore you to decide this year to do just one thing to bring about awareness and raise crucial funds for this remarkable charity because in case you missed it, clinical trials to treat symptoms have begun! The cure has been found in the lab and we hope gene therapy will be the answer to turning that into reality for people like Harriet. We have one foot over the line! And if you act today you will be helping to put the other foot over it too.

Change the world. Cure Rett Syndrome. I remind people of a time whereby a cure seemed impossible for Polio, Tetanus, and Smallpox. A time existed, not too long ago where Rabies, Measles, and Yellow fever were ‘just life’. Today there are millions of people alive because these diseases today have cures. You can literally change the world and save lives before it’s too late.

You can hear more of Kayleigh’s music on her Facebook page