Thanks for taking the time to read my page!

I ran the Adidas 5K Women’s Challenge in Hyde Park in London on 11 September to raise money for Rett Syndrome Research Trust UK in honour of my daughter Erin and other girls around the world suffering from Rett Syndrome. It was an emotional but fun day and I managed to run in 33 minutes which is an achievement for my standards as I never run for any purpose before other than catching a train or bus!

Rett Syndrome? Imagine the symptoms of autism, cerebral palsy, epilepsy, Parkinson’s disease and severe anxiety disorders in one little girl...  Rett Syndrome is the most common genetic cause of severe disability in females and yet not many people have heard of it. 

My daughter Erin who is now 7 has this neurological disorder.  She developed normally for the first year of her life and then started to lose all her skills one by one which was so distressing for her and for us.  She is unable to walk, talk or use her hands. We guess that her dream is to play the piano and believe she is a music genius trapped in her own body. The picture here was taken with me waiting behind her in case she fell off the chair as she is unable to sit well unaided.

It is not all that bad! Rett Syndrome is potentially curable. It is the only brain disorder to have been reversed in mice, by Professor Adrian Bird at Edinburgh University. The Rett Syndrome Research Trust UK has one sole aim which is to accelerate treatments and a cure for Rett Syndrome.  RSRT UK is run by dedicated Rett families and overheads are kept to bare minimum so that 98p of every Pound you donate go straight into research.

 

Thank you so much for your donation and for being a part of a dream that is so close to becoming a reality, it means so much to me and other families of Rett girls.