My Story

Hello!

Having entered the London Marathon ballot for over 10 years I was finally 'lucky' and got a place for April. Whilst I've done several shorter runs before, when I got the place I was powerlifting and consequently heavy, heavier than my knees would tolerate for 26 miles. 

I'm giving up some of those extra pounds and I'm asking you to as well. For this run, I'm raising money for Rett UK.

My niece, Harper, was recently diagnosed, and the family are just starting to understand what this will mean for her. She has just turned 2 and is currently pre verbal and non mobile.

What is Retts?

Rett syndrome is a rare neurological disorder affecting mainly females and very few males. It is present from conception and usually remains undetected until major regression occurs at around one year of age, when children may lose acquired skills.

Rett syndrome is usually caused by a fault on a gene called MECP2 which is found on the X chromosome. People with Rett syndrome have profound and multiple physical and communication disabilities and are totally reliant on others for support throughout their lives.

The gene abnormality prevents nerve cells in the brain from working properly.  Almost all people with Rett syndrome have no history of the disorder in their family, and the mutation has happened spontaneously.

There is currently no cure for Rett syndrome and treatment for the disorder is  focused on the management of symptoms, requiring a multidisciplinary approach. For us this is currently physiotherapy and speech & language.

If you are able to donate, even a £1, Rett UK can continue to support families and help to progress possible gene therapies in order to cure those with Rett syndrome.

A million thank yous!