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.


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