A TEENAGER from Bittaford is helping to raise awareness of genetic disorders in children by promoting Jeans for Genes Day on Friday, September 23.

Tirion Hughes, 17, is getting behind the day organised by children’s charity Genetic Disorders UK, when the public is encouraged to wear jeans to school or work in exchange for a donation.

Tirion has Ehlers Danlos Syndrome, which causes severe pain in her joints, and is partially sighted. She is a pupil and student chair at the Royal National College for the Blind in Hereford, where she currently gets around using a borrowed wheelchair.

Needing one of her own, her family turned to charities including the Newlife Foundation for Disabled Children for help. And thanks to support from Newlife working with Genetic Disorders UK, Tirion is set to get her own lightweight wheelchair costing £2,355.

Mum Laura said: ’Tirion is able to walk, but not long distances. When she lived at home we were always there to drive her around so she wasn’t as reliant on a wheelchair. Now, however, she is at college many miles from home and learning to be more independent – doing her own shopping, cooking for herself. Without a wheelchair this would be so much harder for her.

’The equipment she is getting will support her whole life. Tirion is in constant pain because her joints have no strength in them at all so her muscles have to do all the work. It is an invisible but very painful condition.

’Being able to use a wheelchair helps reduce the pain so she can concentrate on her college work and study more effectively. It also helps support her social life at college – something she didn’t have when she was at home.

’She tells me ‘it’s like having a normal life at last’.’

Genetic Disorders UK has partnered with the Newlife Foundation to offer more families affected by genetic disorders the support and equipment they need. Newlife received money raised through last year’s Jeans for Genes Day, and is using it to provide specialist equipment like wheelchairs, car seats and portable hoists that will make a real and lasting difference to the lives of youngsters like Tirion and their families.

Newlife is the UK’s largest charity provider of specialist equipment for children with disabilities and terminal illness.

For more information on this year’s Jeans for Genes Day visit www.jeansforgenes.org/getinvolved .