I never thought I'd be able to run 1k without passing out or throwing up, let alone 10.

Last year, right at the start of lockdown, my 'running' journey started when my husband began a self-imposed 5k for 500 days challenge for Reverse Rett.

Combined with the stress of lockdown, the lack of my usual daily walking and the start of the 5x50 team challenge, my competitive nature made me feel I had to start running too.

15 months later, I'm able to run 5k without passing out or throwing up and have done a couple of 10ks too.

How lucky am I.

Through a bit of willpower and determination, I have been able to will my legs to move, my arms to pump, my breathing to regulate. I've chosen to do something and have made my body follow suit. I've set myself a goal and been able to achieve it, with no more effort than some heavy breathing and sweat!

If only Hannah could do the same. 

Over the past 15 months, whilst Vincent and I have been pushing our bodies to do more, Hannah's has become able to do less. Her mobility has deteriorated, her seizures have worsened, her anxiety has intensified. She could have all the willpower and determination in the world (and I think she does), but Rett Syndrome would still keep her body locked in.

Gene therapy clinical trials for Rett Syndrome are on the horizon, respresenting the best possible chance for a release from Rett for Hannah and girls/women like her. 

In the meantime, it's critical that we keep those with Rett Syndrome as safe and healthy as possible until transformative treatments are available.

I'm running the London 10k, as part of the Reverse Rett team, because clinical trials and the CIPP Rett Centre at Kings' College need to be funded if the hopes we have for Hannah, and all those like her, are going to be fulfilled, and nobody else is going to do it. 

Unless people like us care a whole awful lot, nothing is going to get better, it's not.

Thank you for your support and kindness, it means a lot to us all.