Running for Rett Syndrome and Evie (From Salisbury Journal)

Running for Rett Syndrome and Evie

4:08pm Tuesday 11th March 2008 in

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A WINTERBOURNE Stoke father is preparing for his first London marathon to raise funds and awareness for a charity important to his family.

Dr Roger Palmer, 44, has run half marathons before, but decided to go for his first full marathon when the Rett Syndrome Association (RSAUK) announced they had finally managed to get one place on the London Marathon this year after trying for years.

His daughter Evie, who is six years old and attends Exeter House, was diagnosed with Rett Syndrome the day before her second birthday. She cannot walk, talk or use her hands, but is gradually learning to communicate using pictures and symbols.

Rett Syndrome is a genetic disorder that mainly affects girls. A child with RS will usually develop normally until some time between six to 18-months, when they enter a regression period and lose speech and hand skills. Many are left unable to walk, most do not have any speech and will have some kind of breathing abnormality, and there are lots of other physical problems that can occur too, such as epilepsy, scoliosis, reflux and dyspraxia.

Researchers in Edinburgh announced a major breakthrough last year when they managed to reactivate the mutated gene in mice and reverse their symptoms, which was previously thought to be impossible.

Roger's wife Helen said: "It will take many years to translate this work into a human treatment, but we are nevertheless hopeful that a viable treatment will be found within Evie's lifetime and I believe other genetic conditions will benefit from this research as well. This is what has prompted us to start fundraising."

The fundraising is going brilliantly as the Palmers have already smashed their original £4,000 target. Friends Sue and John Stammers, who run the Heale Garden Café, are donating 10p per slice of cake sold in March and also have a collection box and are selling second-hand books to help raise more. The Palmers' local pub, The Bell Inn, is also going to donate some of their proceeds from the sale of scones and coffee.

Roger has been working hard to prepare for the marathon, training at least five times a week, and is ready for the challenge on April 13.

Helen said: "Roger ran the Dublin marathon in October last year. The opportunity arose while we were on holiday there and he thought it would be a good test of how his training was going. He came in at three hours 40 minutes, which is not bad for someone who is one year off the veteran class!"

To sponsor Roger go to www.justgiving.com/helenmurray1.