Hi as many of you already know my daughter Robyn (12) has Rett Syndrome.  We are so close to a cure it is something i could have only ever dreamed about.

The Rett Syndrome Research Trust have little overheads and they guarantee 97% of the money raised goes directly on research projects.  We can stand proud that we are reversing this in animals.  Our girls are next, but we need more funds.

I am walking with a dedicated group of friends, supporters and other family members in the Rett community 60km across the South Downs. I expect it will take around 15-18 hours to complete this. It will be painful, but not as painful as what Robyn goes through every day, which should and could be prevented.

Robyn has never eaten a Mcdonalds and she never will.  Rett syndrome as taken her ability to eat, walk and talk.  She has seizures like in the picture above that knock her out for days.  Last major one she ended up in a coma.  The curvature of her spine is now so severe that she needs the operation to prevent her crushing her organs - but her breathing and sleep apnea could possibly prevent this from happening.

Please help me to help Robyn and the other many girls like her!

Now here is the science bit, Rett Syndrome has been reversed in the lab on mice suffering from Rett and the same symptoms Robyn has.

Over the last few years Rett Syndrome Research Trust UK a relatively new charity (June 2010) has been at the forefront in funding for clinical studies to begin in girls like Robyn to reverse the syndrome and cure her and many other children some young some older, but still someones child.

We need to continue with the incredible progress brought on last year, which has massive inroads in driving the reversal and cure from mice to Robyn.

Thanks for taking the time to visit my JustGiving page.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. So it’s the most efficient way to donate - I raise more, whilst saving time and cutting costs for the charity.

So please dig deep and donate now.