A PLUCKY teenager with a rare genetic disorder was almost forced into selling his musical instruments in an effort to pay for a new wheelchair.
Eddie Maxfield, 16, was born with Hypermobile Ehlers-Danlos syndromes (EDS) – a group of rare inherited conditions that affect connective tissue – but only began experiencing symptoms from the age of 10.
As a result, he has respiratory and gastrointestinal problems as well as frequently dislocating his joints, plus chronic pain and fatigue, and is starting to go deaf.
Eddie has undergone an operation on his nasal passage, physiotherapy, occupational therapy and has medication for pain relief, asthma, allergies and stomach in order to ease his symptoms.
His mobility was severely hit last winter, and he was in need of a wheelchair. After being advised that the NHS would not offer him a motorised chair, Eddie felt he had no option than to try and sell his possessions in order to fund the new chair he so desperately needs.
But after a few kind-hearted Facebook users saw him attempting to sell his Go Pro camera and violin, he was urged to begin a crowdfunding page instead.
He said: “If I want to go out alone, I have to use crutches and risk severely injuring myself. I’m getting worse and now can only really get to the bottom of the street before I’m in severe pain.
“These [chairs] cost around £5,000, which is a lot of money and I can’t afford to buy it myself. A wheelchair is like a pair of trainers for a marathon runner, they need to fit right for the long term. I was desperate so I bought a cheap rubbish wheelchair, but now I really need a better one.
“Having a new wheelchair would greatly improve my quality of life. It would also make me much more safe and independent.”
When Eddie was, he began suffering from pains in his ankles. Since then, further troubles have piled on top of one another, leaving him to feel isolated in his own home in Newington. Eddie said: “I used to be involved with the cadets a lot growing up and now I can’t access it. I’ve even dropped out of doing my National 5 exams because I could not get to school. I feel trapped.
“It’s even more difficult when I’m on my own. It’s sad and it makes me angry that the NHS cuts continue affecting a lot of people. I’m not one of the worst cases, but a new wheelchair would have such a huge impact on my life.
“To have more than £1,000 is fantastic and I can’t thank people enough for donating. This wheelchair would mean so much to me.”
Tracey Gillies, medical director for NHS Lothian said: “There are over 100 different types of wheelchairs available on the NHS. Children and young adults are given priority when providing wheelchairs. Most assessments are completed within two months, but it can be as little as a few days if it is an urgent case.
“Once a patient has been assessed as meeting the criteria, we aim to provide a wheelchair within a few days if a suitable wheelchair is in stock.”
For more details about Eddie’s fundraising project, visit: www.gofundme.com/5fnpcls