This year I’m doing a different sort of challenge for Reverse Rett, one where all I have to do is stop speaking, texting or writing for 24hrs.

'That doesn’t sound too bad!' I hear you cry.

And yes, indeed, I felt the same when I first signed up. 

I thought, 'great, here’s a challenge that doesn’t involve months of training and the kind of discomfort and exertion that for me often comes with running or the other physical challenges I’ve done over the years. Sign me up.'

But the closer I get to this one the more aversive it is feeling. I have actually already put it off three times.

I don’t want to not speak for 24 hours. I can’t do it on a work day because I can’t work without either speaking, texting or writing, never mind all three. I wouldn’t be able to do my job. 

I don’t want to do it at the weekend. It will been boring. I won’t be able to spend proper time with my family or phone/text my dad when I want to tell him something.

As the day gets closer, I keep finding myself complaining more and more (out loud of course) and have to keep checking myself, especially when Amber is in earshot.

A couple of days ago, I heard myself (in her presence) say, ‘how can I not speak all day? I won’t be able to do anything, get anything achieved or have any input in anything we are doing as a family.’ 

Then I thought, YES exactly, this is why I need to do the challenge.

That's why it is a big challenge, one as mentally stressful as any physical challenge I have ever done. 

I feel I owe it to Amber and Beth to experience just a little bit of what they live with to gain more insight and appreciation into what they put up with all the time.

And I need to do the challenge because hopefully, some kind people will sponsor me and make it worth my while. 

We are almost at the point of human gene therapy trials for Rett Syndrome but at Reverse Rett, we still have work to do. 

We  need to fund efforts to refine gene therapy approaches so that as technology evolves, the process is less risky and more effective for patients. 

We need to fund the UK clinical research and treatment centre (CIPP Rett Centre) who are taking such good care of complex UK patients with Rett and disseminating learnings and best practise to help improve outcomes for all affected children, young people and adults.

We need to continue to reach out to undiagnosed and or unregistered patients and families to make sure everyone has access to emerging treatments when they come. 

We need to continue to recruit and support patients and families on UK clinical trials of drug treatments for symptoms. 

And we need to be prepared when the time comes, to advocate for effective treatments to be funded and accessible for everyone with Rett regardless of age and stage of the condition.

I am so infinitely grateful to everyone and anyone who has ever supported Reverse Rett for helping us get to this point. 

Every day I feel more and more positive about what lies ahead for Amber, Beth and all the other children, young people and adults with Rett who we have grown to know and care deeply about. 

Although Amber and Beth are both adults now, we still hope and expect that treatment addressing the underlying cause of Rett, (a broken gene, leading to a lack of Mecp2 protein) will significantly improve their health and quality of life. 

We have every hope that the difficult disabilities they live with can be improved with therapies too. Things like, the ability to use their hands, perhaps regaining the ability to stand if not walk, and yes, we do live in hope that some speech will return. 

After living a life with absolutely none of this for so long, any improvement that can help our girls be a little bit more free of their disabilities and more safe, healthy and comfortable in their bodies will be life changing.

Thank you for reading Xx