Hi there. Thanks for taking the time to support this amazing cause. As some of you know, my daughter Dylan was diagnosed with Rett Syndrome last September. Despite losing her ability to talk, crawl, feed herself and suffering from acute pains from head to toe (the list goes on), Dylan never once gave up her spirit for life.  She amazes me everyday with her stamina.  

I know these are the good days and I shall treasure every moment. The worst is yet to come; she faces a life of epilepsy, chronic spinal curvature and life-threatening breathing difficulties. She will spend most of her life in a wheelchair, being fed through a tube. On top of all this, she is at risk of sudden death.

I have wondered many times why this had to happen to Dylan. Rett is a particularly cruel disease, which locks these girls in their own bodies unable to communicate what they know. This is not a hereditary disease - it can happen to any family at any time.  Every 5 hours a girl is born with Rett Syndrome.

But there is real hope. In 2007 a British scientist reversed the symptoms of Rett Syndrome in mice. By restoring protein levels in the faulty MECP2 gene, mice which were in the late stages of the disease, days away from death, became indistinguishable from healthy mice.  Since then, Rett has been reversed in human cells under laboratory conditions.  It is on course to be the world’s first curable brain disorder. A cure for Rett Syndrome would also be a major breakthrough in attempts to cure other neurological diseases like Autism, Parkinson’s and Cerebral Palsy.

But the government or lottery contribute zero to this research so we depend solely on private donations. We have reached so far but we need more funding to get clinical treatments within the lifetime of the girls suffering.  98% of donations go directly to high quality research. No money is wasted.

 Exercise has not been a major feature in my life for the past 15+ years I have no idea how far or how long this will take. Most people have said, “It’s a walk in the park” therefore I will finish the race. This run is for my little Dylan who has been so brave throughout her ordeal, to have it all and then so suddenly to have it taken away again. Thank you for helping.