Revolution

This awareness month, Army of Us has been all about Revolution.

We’ve shared awareness images with our take on famous propaganda posters, created profile flags and made timeline posters. But what do we mean when we talk about revolution in the context of all of us living with Rett syndrome?

Rise against RettA revolution often happens when people demand change, when there is a tipping point and the status quo is no longer acceptable to the majority. Rett syndrome is obviously a big part of what we face and how we feel, so it is easy to say that our revolution is about ending the direct – and indirect – impact it has on our lives and those around us. We hope that our families and colleagues who see these shared items in our timelines realise that, to us, this is a struggle and a fight that we are in. It reminds them that we need their help and support if we are all to rise up against Rett syndrome.

To me, revolution has a deep and profound meaning when viewed in the context of our battle with Rett syndrome. Like all revolutions, the movement starts from a small group of people, with an idea or vision. Often this group face overwhelming odds. As I sit here and write this today and think about my own journey over the last seven years with Carys, it reminds me of just how overwhelming those odds were to me when we first received our diagnosis.

Like most people, it took months to come to terms with the news that our lives were going to be different, especially of course for Carys. And like most people in fight, I looked for a quick win. I wanted desperately to make Rett syndrome go away. When I heard of a promising study and potential treatment to reverse the symptoms of Rett through a bone marrow transplant, I committed myself fully to the fight. For months I fund-raised relentlessly and grasped at any straw that made it look like I didn’t have to deal with this diagnosis. I thought the battle was won.

It was heart-breaking to learn that this study wasn’t reproducible, and at that point my morale was at its lowest.

That lesson taught me that the fight we are in is a war of attrition. It is a long, sustained battle. Whilst we may have some promising research on the horizon that will help us win, we need to remember that we need to survive now to see that day. A war of attrition is won through marginal gains, by wearing the enemy down. It is so easy for Rett syndrome to wear us down, and even more distressing when we turn on each other too. But we need to focus on these marginal gains too.

A cure will come and I am cautiously optimistic about the potential for gene therapy. We know that in three years, with FDA approval, we may start a small trial to test the first types of gene therapies that are starting to become available. There are lots of risks associated with any Phase 1 trial. It is not clear to me if this type of therapy will be successful. A trial takes many years to complete before most of us will see the benefits, and it is also unclear how this will affect Carys who will most likely be an adult by the time is available.

For this reason I am also incredibly excited about the Trofinitide trial which will soon enter Phase 3. Although this will not be a cure, it is something that, in the next few years, I hope will make a difference to Carys. Even a small gain in her ability to sit, walk, use the eye gaze will make a big impact on her life.

Here is how we fight back, and how I believe we start winning this war today. It is the advice I wish I had received when we first received our diagnosis.

We should view all potential treatments with caution, and not allow ourselves to relax or to become complacent. There are things that we do every day that helps us win this battle, and helps me fight for Carys.

  • Every day we maintain her ability to sit and stand
  • Every day we personally ensure she has eaten enough calories
  • Every day we work on her communication, both low tech and eye gaze, at school and at home
  • And every day I love her, cuddle her and let her know that I am proud of her and include her in everything we do as a family

The best thing I ever did was to presume Carys’ competence, and to treat her accordingly. It turned out that she was waiting for this all along. She also had a lot to say, and that surprised me, delighted me, and motivated me to continue the fight for her.

We would love to hear what the Rett resistance means to you? Should we keep this campaign going after awareness month? And what form should that take?
Real flags? Real tees? Should we continue creating posters and profile frames?

We appreciate hearing from everyone who reads our blog, and shares our message.

Also, please ask if you are unsure about the science and detail behind any of these trials. I am constantly learning and am happy to be corrected if I have misunderstood a study.

 

Revolution

Friends

I’ve had the pleasure of meeting so many amazing people through Cure Rett. Friends who’ve dropped everything to support each other and the girls, friends who’ve cried with, who’ve pushed, pulled, organised, supported, donated, put themselves through agony and have just been there for anything.

Honestly, it can be tough being a friend to someone who’s child has just been diagnosed, what I mean by tough is that you want nothing more than to take away the pain and fix this, to be a shoulder to lean on, someone who can help work out what to do next. You also don’t know what to say, you don’t know how to express yourself, you don’t know how to help someone deal with the devastation of Rett syndrome, when you struggle to understand it. Some friends struggle so hard to say something, that they say nothing at all. Day’s and weeks of being silent eventually lead to guilt and the weight of the guilt puts so much pressure on the friendship that eventually it’s crushed by misunderstanding.

Other friends form a circle of support, stepping into the gap and holding you up and I’ve had the pleasure of dealing with so many of these amazing friends recently.

Friends are such a vital part of support, when you decide to do something, generally it’s your friends that stand up next to you and say “me too”. In all the races you run, parties you organise, cakes you sell, you can be guaranteed that there’s a friend somewhere who wants to help. Friends who run races with Erica and organise parties for Holly, friends who sell out HollyFest before it’s even opened properly, who climb on bikes and arrange parties for Ade and Emma. Friends who show up in force to attend Ruby’s curry nights and quiz show’s for Laura and John. Or the lovely ladies from Sophie’s Stragglers out running for Sophie, Paul & Faith. There are so many examples of great friends, who are not only there emotionally for the parents of our girls, but are there in so many different ways.

Over the past few months I’ve seen the Olive’s Army push into gear and arrange everything, from Festivals to fun days, I’ve seen them mobilise the community and bring tons of people out to support events for Olive, Paul and Janie. Beaumont.

I’ve seen an entire Town rally around Emlyn, pushing themselves far beyond any expectations. Watching people step up, start organising, running away with ideas and just filling weeks with events for Emlyn and Cure Rett. Spending their nights and week ends raising awareness and shaking buckets at people. Driving around to Kori and Darren’s house for meetings, but stopping off to buy some M&M’s for Emlyn because they know she loves them. Team Whitby has filled places in the Triathlon without a fuss, just because it’s the kind of people they are.

I’ve seen the A-Team, form a ring around Ava, Matt and Laura Carter, then just basically smash anything down that’s in front of them. The dirt from Tough Mudder wasn’t even properly washed off and they were planning an assault on the London Triathlon. Baking cakes after 13 hour shifts for a bake sale to raise money and awareness. The A-Team have already started to organise multiple events for next year, 19 people did Tough Mudder this year, I’ll be very surprised if that figure isn’t doubled, at least, next year.

I was watching as the A-Team were attempting the second last obstacle at Tough Mudder, called Everest, and Laura was struggling to get to the top of it, she was exhausted. One of the many friends doing it with her, ran back down took her hand and said, you can do this, you just get up there and we will catch you. A big group of tired, muddy friends hung over the edge of Everest, and cheered Laura on as she charged the ramp. They caught her, and held her, and all then they pulled her up and over Everest to go and beat Tough Mudder. If there ever was a perfect metaphor for friendship, this is it.

I can’t express my admiration for these friends enough and I know how much the families you’re supporting appreciate this. The love that the families express when they talk about their amazing friends is obvious, they are so thankful and grateful for all the big things friends do, but I think that what makes great friends extra-special, is all the little things they do.

True friends are there to lift you up when you’re are down, to help you take a step forward when you don’t think you can. To be caring enough to bring an M&M when you need it, or build and army when you think you don’t.

Sometimes being a friend doesn’t mean you have to say anything at all, it means just being there.

Friends…you’re awesome.

Friends