Teenager Tirion Hughes from Dartmoor in Devon is looking forward to getting her own lightweight wheelchair so she can be more independent.
Tirion, aged 17, has Ehlers Danlos Syndrome, which causes severe pain in her joints, and is partially sighted. She is a pupil at the Royal National College for the Blind in Hereford where she currently gets around using a borrowed wheelchair. Urgently needing one of her own, her family turned to Newlife Foundation for Disabled Children for help. Newlife is the UK’s largest charity provider of specialist equipment for children with disabilities and terminal illness.
Now, with the support of Newlife working in partnership with Genetic Disorders UK, Tirion is set to get her own lightweight wheelchair costing £2,355.
Mum Laura Hughes 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 Newlife Foundation to offer more families affected by genetic disorders the vital support and equipment they need. Newlife received a grant from funds raised through last year’s Jeans for Genes Day, and this is helping to provide essential specialist equipment such as wheelchairs, car seats and portable hoists which will make a real and lasting difference to the lives of individual children and their families.
Newlife Operations Manager Stephen Morgan said: “Demand for our range of practical support services is growing as statutory services’ budgets are reduced. Last year (2015), Newlife supported 2,597 children around the UK through its range of equipment grant and loan services. Therefore, we are delighted to be working with organisations like Genetic Disorders UK. Together we can provide the equipment that really will change children’s lives.”
Pictured: Tirion Hughes