Bright and bubbly four-year-old Eden Taylor, from Swindon in Wiltshire, will soon be able to play with friends and family, thanks to her new powered wheelchair and Newlife the Charity for Disabled Children.
Eden was born with Merosin Deficient Congenital Muscular Dystrophy; this condition means she has very weak muscles and is unable to walk. She needs the help of an adult with all her daily care and mobility needs. Due to Eden’s weak muscles, her breathing and swallowing is sometimes compromised so she has to be ventilated overnight and is fed 75 per cent of her nutrition through a tube in her stomach.
Eden was provided with a powered wheelchair by the family’s local statutory services, however she could not drive it with the controller as she needed something more sensitive to touch – so it was returned.
Mum Kelly Brown said: “Eden has not yet been able to experience any kind of independent mobility because she’s always relied on an adult pushing her around. What she needs the most is the opportunity to keep up with her peer group and explore the world she lives in.” After researching several options Kelly found a powered chair that is perfect for Eden, but she was quoted £15,000 – which is way beyond the family budget and it would have taken a long time to raise the funds.
That’s when Kelly turned to Newlife – the UK’s largest charity provider of specialist equipment for children with disabilities and terminal illness.
“This power chair we need cannot be funded through the NHS, which is why we started looking elsewhere. We were starting to get desperate about how we could make this happen for her as we were really struggling. Eden being mobile means everything to us, that’s why we came to Newlife,” said Kelly.
Newlife has now provided Eden with a powered wheelchair through Newlifeable – www.newlifeable.co.uk – a service which takes redundant disability equipment and recycles and refurbishes it to meet national standards before offering it on a first come, first served basis.
The chair is currently with the manufacturer as it needs further adaptions specifically for Eden. The cost of the adaptions comes to £6,767, which is considerably less than the cost of a brand new chair.
As well as providing Eden with the equipment, Newlife has put £1,329.60 towards the adaptions. The remaining amount of £5,437.40 was raised through a donation from a trust and help from a great number of friends, family and work colleagues holding fundraising events for Eden.
Kelly added: “When we saw the chair available we were desperate to see if we could get this and adapt it for Eden’s needs. We thought that the cost of a used chair, once adapted, would get Eden moving much quicker. The chair itself looks brand new and is perfect for Eden.
“Although Eden has to wait for all the adaptions to be completed, we are so excited as our future has become a little brighter. Newlifeable has given Eden this opportunity that didn’t seem possible. Our dream for her to be independent, chasing us around the house, is a step closer to reality thanks to this wonderful scheme,” says Kelly.
For more details about how Newlife supports families in the county, go to https://newlifecharity.co.uk/Wiltshire.
Right now, the charity is working with a further eight families in Wiltshire with equipment needs of £16,299. If you think you can help, go to the website and donate. Alternatively, contact the Newlife County Liaison Team on 01543 431 444, email email@example.com.
Newlife guarantees that 100 per cent of monies donated or fundraised in Wiltshire will be used to specifically help children with disabilities and terminal illness in the county.
Pictured: Eden Taylor