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29/03/2019

Reverse Rett Weekly Blog

We produce a weekly blog to share what we’ve been up to, information from the rare disease community and pieces from families living with Rett Syndrome.

We want to bring the UK Rett community stories of our activities, things we’ve found interesting, and updates from research as well as the real life thoughts and experiences of families living with Rett Syndrome.

We’ll be posting the blog every Friday. If you’d like to share your own story on our blog, please contact rachael@reverserett.org.uk

We are doing another ‘walk’ this May. I use the term ‘walk’ in trepidation. Usually the word conjours up pleasant images of slow and easy rambling, chatting and post Sunday lunch snoozes followed by bracing wake up strolls around the park.

Anyone who took part in the first walk we did at Reverse Rett back in 2012 knows how different, different walks can be. This was Action Challenge’s ‘Just Walk,’ a 60K slog around the South Downs and truly 20 hours to remember.

How difficult can a walk be? That’s what I thought when I signed up. All you have to do is keep putting one foot in front of the other. What’s so hard about that?

We set off at 6am on a cold but bright spring morning; a jolly group of us, all stepping out with so much hope in our hearts, each for the love of a young girl with Rett.

The weather was grand until lunchtime. We stopped and dawdled eating sandwiches and crisps, lolling on the grass taking pictures and inspecting our feet. Some of us called home to check all was well with our girls. Then we walked on.

It wasn’t so bad just putting one foot in front of the other. For me, always, my heart and mind drags my body through these sorts of challenges, even when I am not quite fit enough. We marched on as the weather turned cold and dark towards the late afternoon. The wind and rain came just as we started up the hills, now trekking in a single line, each of us following the fading figure ahead. I stared hard at my feet reappearing in step and tried not to think about the many miles still ahead.

Five kms from the end, standing on one leg in the dark, taping the last of the blister plasters under my soaked socks, I saw Andy crying for the first time. For me the breakdown came later in the early hours of the next morning when I got up to go to the toilet and fainted, physically depleted. The next day I was bent double with stiffness, all the way back to Manchester, all brought about by just walking.

I swore after that walk that I would never take on that kind of challenge again.

When we set off that day, less than two years from launching Reverse Rett, we were so full of hope. All of us had young girls. All of us, looking ahead at all the possibilities that science and research might bring, marching positively onwards, towards better days for our children. These days, I am more pragmatic about what I can physically accomplish, as well as keeping the rest of my life and work moving forwards.

Here, now, in 2019, things are better, research has progressed. UK clinical trials are a reality and the first human clinical trial of gene therapy for Rett will begin this year.

Rett Syndrome, however, is indifferent to research. It doesn’t care about the reversal, the potential for treatment or clinical trials of any kind. Whilst the trajectories of science and opportunity for Rett may be soaring, the reality for children and adults living with the disease, is that still, today, there is no approved treatment for this condition which is so difficult to suppress in order to give these girls the lives they so deserve.

On that day in May when we set out in 2012, our group walked for the love of eight girls with Rett. Since then, two of our group have lost their loved one to the disease. Two others have endured spinal surgeries. All have endured a plethora of symptoms which despite what I’ve said here, make our walk that day look like a walk around the block.

They aren’t the only ones. There are girls and boys up and down the country and beyond living with the same difficulties. Several UK families who were closely involved with Reverse Rett since the organisation was born have lost their children and every day, more and more tiny children are being diagnosed.

However hard it is, we have to keep going. We have to keep moving towards better days for people with Rett. Their lives matter and so does our love for them. But let not the measure of this love be loss or even the expectation of loss. Let it be what we are willing to give, in life and in death to bring about change.

We just might be the last generation of parents to endure this nightmare; our girls, the last of these girls living lives less lived, locked in by this condition despite all the ways we try to make it better for them.

This spring, we’re setting out on another walk. It’s only 25K this time and no hills. If I can do it, you can too. We’ll be walking in hope again and for the love of those we’ve lost. Rett Syndrome may be relentless; we are equally relentless and we won’t stop until we get where we’re going. It’s just about putting one foot in front of the other.

More next week.
Rachael Stevenson, Co-Founder, Executive Director, Reverse Rett

The Reverse Rett Sole Mates team will walk 25K of the well-known London to Brighton Challenge from Richmond to Sutton on 25th of May 2019. You can sign up and join us here.