My youngest daughter, Amber, finally lost the ability to walk at the age of 17. 

Amber, now 25, has Rett Syndrome, a genetic disorder which leaves previously healthy children without speech, the use of the hands and the freedom of mobility, through a slow progression which can last their whole childhood.

In 2021, we are on the edge of a new age for people with Rett Syndrome with clinical trials of gene therapy projected to start at the end of this year.

Similar gene therapies in other conditions, such as Spinal Muscular Atrophy (SMA1) have drastically changed the prognosis for children with the condition who, without treatment, die around the age of two.

In Rett Syndrome, we have an advantage in that many affected children do survive childhood. We know as well, that Rett is caused by the absence of one particular protein. And we know when you put it back, in mouse models of any age, that the symptoms of Rett go away.

I last heard Amber's clear words when she was three and I have always thought I would wish to hear her speak more than anything. But in the last eight years since I've seen her lose the ability to walk, then stand and become progressively more immobile, I have longed for her to just get on her feet again.

I am running this 10K not because I love running but because with a bit of effort, I probably can. I know Amber would love to move freely on her legs again; going to the things she wants to see and be close to-people and windows and bowls of crisps and outside. Even to be able to move from her bed to her wheelchair would be amazing for her.

When you can't move much, every bit of physical freedom matters.

I'm embracing mine in her honour and that of my step-daughter Beth who also has Rett and is also now completely unable to stand. Beth is even more immobile than Amber because of the metal in her spine and stiffness which has set into her limbs at the grand old age of 21.

This run and all the work we do at Reverse Rett, is for both our girls.

It's for anyone who can still benefit in any way, from treatment for Rett Syndrome. It's for the little ones who might yet run again and in honour of all those for whom this cure comes too late.

You'll be in our hearts, minds and legs as we go on 25th July! 

It will be my 46th birthday and 21 years to the day since Amber was diagnosed with Rett Syndrome.

Thank you for your support Xx

Info about SMA treatment: https://www.bbc.co.uk/news/uk-57309613

Gene therapy in Rett Syndrome article: https://www.spectrumnews.org/news/alternative-gene-therapy-approaches-take-aim-at-rett-syndrome/

Rett Syndrome after reversal: https://www.youtube.com/watch?v=Clsjf6Uv6_w

Reverse Rett Strategy 2021-2026: https://www.reverserett.org.uk/core/media/Reverse-Rett-Strategy-2021-.pdf