A FATHER who has “barely been in a canoe before” will tackle a 200-mile trek to try to find a cure for his daughter’s rare neurological disorder.
James Stokley, 34, will attempt to cover the entire length of the River Severn in a canoe he bought on eBay.
James’s four-year-old daughter Summer suffers from a debilitating neurological condition called Rett Syndrome – which is likely to leave her dependent on others, wheelchair-bound and unable to talk for the rest of her life.
James, of Auckland Drive, Brighton, and his friends Darren Blue Sole and Marc Bunnage have bought boats on eBay and borrowed life jackets from Hove Lagoon for the ambitious attempt.
Earlier this year, The Argus helped to get a special tricycle made to keep Summer mobile, but James now hopes to raise funds for urgently needed research that could improve his daughter’s life.
He said: “My beautiful daughter, Summer, was born an apparently healthy little girl with no problems.
“Little were we to know that just after her second birthday she would be diagnosed with Rett Syndrome, a devastating neurological disorder for which there is currently no cure. “Rett Syndrome first strikes seemingly healthy little girls between the ages of six months and three years.
“Summer will never be self-sufficient. She will be wheelchair-bound and dependent on others for every aspect of her life unless we find a cure.
“I want to hear my daughter speak, see her walk and have a normal life. This is why myself and my friends have formed Team Summer and are going to row the River Severn from the source [which to start with will have to be by bike as the river is only a trickle in a bog in the Cambrian Mountains] to the sea. “We are not canoeists but we are determined to succeed. We must get a cure for Rett Syndrome. “We want Summer and all the other girls and women with this devastating disorder to be able to live a normal life.”
James, Darren and Marc will set off in September.
To donate, visit www.justgiving.com/jamesstokley.
To see a video of their training, visit theargus.co.uk.