A disabled teenager from Bolehall has just returned from a trip to New York thanks to fundraising efforts from his friends, family and local children’s charity, Simon’s Heroes.
Luke Taylor, 16, has Duchenne Muscular Dystrophy (DMD) – a progressive muscle wasting condition that was first diagnosed when he was 5 years old. DMD is an inherited condition which affects the muscles, causing muscle weakness. The muscle weakness is mainly in the proximal muscles which are those near the trunk of the body such as around the hips and the shoulders. This means that fine movements, using the hands and fingers, are less affected than movements like walking. The weakness appears in early childhood and develops gradually, worsening as the child becomes older. It ultimately leads to the loss of mobility.
Luke became wheelchair bound at age 9. He is only able to move his head and has some movement in his hands and fingers. He lives as normal a life as possible and like most boys his age, enjoys football. He plays wheelchair football for West Bromwich Albion and is studying towards a coaching qualification for sports disabilities at the Queen Alexandra College in Harbourne where he attends 3 days a week. The college caters for pupils above the age of 16 with visual impairment, autism and other disabilities. He also spends 2 days a week with The Albion Foundation, a registered charity that works in partnership with West Bromwich Albion FC. They deliver a range of sporting and educational opportunities to young people with disabilities and learning difficulties.
Luke also has a passion for travelling and he and his family try and get away as much as possible to fulfil this. Such trips take a lot of organisation and can be very expensive as they have to hire a mobile hoist to help lift and manoeuvre Luke about.
He has always dreamed of visiting New York but preparation costs have been prohibitive taking into account the equipment and insurances required. Luke’s mum Lizzie Taylor began fundraising to buy him a portable hoist and approached Simon’s Heroes to see if they could assist.
A charity football match was organised at Tamworth FC in October. Simon’s Heroes played against Luke’s Legends, a team made up of Luke’s family and friends. The event was a great success and raised over £1500 and, together with the funds that Lizzie had already raised, the family were able to purchase the hoist in time for Luke to take his trip of a lifetime in November.
“We had an amazing time! We couldn’t have coped without the hoist. It was used daily to get him in and out of bed and to shower and use the bathroom. It would have cost $100 dollars a day to hire one, it made a massive difference. It also meant we had more spending money.” Lizzie Taylor.
“We visited the Empire State, Top of the Rock, Rockefeller Center, 911 Memorial and Museum, Central Park, One World Observatory and did a bit of shopping in Hollister – seems to be his favourite shop !! Spent out!”
“My favourite part was the 911 Memorial and One World Observatory. The views from the observation deck were awesome!” Luke Taylor.
“Thank you to all our friends and family and Simon’s Heroes for helping us get the hoist. It will continue to make a difference when we are away from home making memories together.” Lizzie Taylor.
Author: C Bull