A DAD has helped set up a charity for his disabled daughter, who suffers from a rare genetic condition.
Andy Stevenson, aged 41, of Pinewood Road, Burtonwood, registered the Rett Syndrome Research Trust (RSRT) UK for 10-year-old Beth, who suffers from the neurological disease, which causes severe physical and learning difficulties.
‘A cure for Rett syndrome is possible in the near future. I am keen to do all I can to help that happen ...'
Rett syndrome, which has no cure, is an autism spectrum disorder that can develop in otherwise healthy young girls, just as they are beginning to speak and walk, robbing them of these emerging skills.
Beth needs 24-hour care, spends most of her time in a wheelchair, is unable to speak and suffers from epilepsy.
Andy, a golf pro at Mersey Valley Golf and Country Club who is married to Lisa, aged 42, said: “All the trustees are very excited that we are up and running. A cure for Rett syndrome is possible in the near future.
“I am keen to do all I can to help that happen for Beth and future generations.”
Andy founded the charity with five other families affected by Rett syndrome and he hopes their efforts will lead to improved treatments to ensure it becomes the first ever reversible brain disorder.
To help achieve this RSRT UK will work closely with a US partner of the same name.
The organisation’s first event, a gala reception, is planned for November 18, and will be held in London with guest of honour Professor Adrian Bird of the University of Edinburgh, who is a scientific advisor to the trust.
Rachael Bloom, chairman of the board of trustees who has a 14-year-old daughter who suffers with the disorder, said: “RSRT UK formed when a group of families came together with the belief that parents must take an active role in the fight against Rett syndrome.
“We want to see this research driven to its conclusion, replicating the results of the reversal experiments not in mice, but in girls and women living with Rett syndrome today.”
When Beth was diagnosed in 2002, Andy’s fundraising challange saw him take part in the Leeds and Loch Ness marathons. He also completed a gruelling assault course called Tough Guy, which took place in Wolverhampton in January and involved running through fire and crawling under barbed wire.
For more information visit reverserett.org.uk
Source:# This Is Cheshire » News