Thanks for taking the time to visit my JustGiving page.

The last time I ran a the Hackney half I made friends with many people but there was one who became my pacing partner for the final stretch. 

While running he told me about this harrowing genetic disorder that I was not aware of. On explaining to me to me how it affects the lives of those that have it and their families; I made a promise there and then that I would run for this cause the next time I ran.

Please support me in fulfilling this promise. My birthday is a week after the race and I would rather receive donations than presents or drinks.

Thank you so much for your support.

What is Rett syndrome?

Imagine being told your toddler you thought was healthy, but perhaps slow to progress, in fact had a rare and devastating disability that would leave them needing lifelong 24/7 care. Rett syndrome changes lives irrevocably. With your support Rett UK is there from the beginning. #ToKnowHerIsToLoveHer

Rett syndrome is the most common genetic cause of severe disability in females and less commonly in males, yet very few people have ever heard of it. Rett children appear to be born perfectly normal but by 18 months they start to regress. They have profound and multiple physical and learning disabilities. They are totally reliant on others for support throughout their lives.

It is estimated to affect about 1 in 12,000 girls born each year and is only rarely seen in males.

https://www.rettuk.org/what-is-rett-syndrome/

https://www.nhs.uk/conditions/rett-syndrome/