How I found Reverse Rett and my hopes for the future 

by Katherine Smith, Nancy’s mum

It was by chance that I discovered Reverse Rett in May this year, very, very early on Day 2 of the ‘beautifully brutal’ Jurassic Coast 100k Ultra Challenge which I had gatecrashed with my best friend who was walking for her chosen charity. 

After just a few hours of ‘sleep’, my friend and I spotted a group of fresh-faced, intrepid explorers, proudly sporting their Reverse Rett t-shirts, clearly joyful at the prospect of embarking on Day 2 of the challenge. 

I was swiftly introduced to Andy and the team who were so kind and interested in my situation, despite their exhaustion…. and I have never looked back! 

At the time I was in a very dark place, facing a bleak future which I dared not even imagine. Denial had got me through the early years, and I’d kind of coasted along until it was becoming that my little girl was turning into a young woman. The feelings of grief and helplessness which I’d been suppressing for years were finally taking their toll.  So when I say meeting Andy and the Reverse Rett team that day in Dorset changed my life, it is no exaggeration. 

I began learning about the extraordinary work Reverse Rett do, and the unbelievable prospect of gene therapy. At first, I didn’t allow myself to get excited… I was too scared. 

I took the decision to start fundraising to help Reverse Rett continue their work. I joined the phenomenal Reverse Rett South Coast Striders team and walked 100k with other families affected and finally embraced that hope. I was filled with such light that for the first time in 11 years, I was genuinely excited about the days of relentless care ahead, believing that one day I would be able to ‘meet my daughter’. The feelings of helplessness and desperation that had become embedded within me, were beginning to fade.

Being part of that team has given me a new lease of life; I have met a group of wonderful human beings who I am now honoured to call friends, who all ‘get it’ and are driven by the same goal; to find a cure for our children. 

Through fundraising, I have been able to share my story for the first time, and have been touched by the outpouring of support from my local community. I am physically, mentally and emotionally stronger and even in my darkest days I no longer feel alone and I’m proud to have become a Regional Ambassador for Reverse Rett alongside other families and supporters.

Nancy has recently been in Exeter’s RD&E following a week of epileptic seizures. Rett syndrome really does like to throw a curveball now and again, mostly again, so the thought of one day, Nancy receiving gene therapy keeps me going. 

For her siblings, I would love for their lives not to be turned upside down, plans changed and cancelled at the last minute, seizures and ambulance crews becoming the norm and the feeling of being ‘different’ somehow.  

For myself, I would like to take away the crippling anxiety that every phone call from school brings, the constant battle for services and support, and the devastating grief of knowing that I cannot make my girl better. 

But these are selfish thoughts, for the true victim of this cruel disease has never complained, she endures suffering, pain, fear, exhaustion and frustration every day, yet smiles through it all. I would love for my Nancy to have a ‘day off’ from her constant battle. She knows everything that is going on yet is locked helplessly in her body. 

The news of a child passing away during the Neurogene clinical trial was devastating for her brave family and the Rett community. It feels like the cruelest blow Rett has thrown at us.   

We must honour each tragic loss of life by endeavouring to fight this disease, now is not the time to let go and give up or that poor family’s loss will have been in vain.  We must do this together, drawing strength from our collective Reverse Rett community. For me, there is no choice but to continue our fight, in honour of all the children we’ve lost and those still living with Rett syndrome.

Katherine’s challenges will continue in 2025. She has signed up for the Lake District and Gower Peninsula 100k Ultra Challenges as part of the Reverse Rett teams. If you would like to join her then please contact Andy Stevenson at [email protected] or check out the 2025 team challenges on the Reverse Rett website. 

If you would like to donate to Reverse Rett then you can DOUBLE any donation you make between December 3rd and 10th in the Big Give Christmas Challenge HERE

Thank you Katherine, we are all glad you found us!