Telford's Luke, 21, to front Hope House Hospice fundraiser
Luke Millington is just like millions of young lads of his age. He likes girls and football.
He’s just failed his first attempt at the driving test (he’s not alone there), but has a re-sit booked for November 1. He’d quite like to find a worthwhile job. He is chatty and enjoys a laugh and a joke.
Where Luke differs from the majority of 21 year-olds is that he is in a wheelchair.
It is down to the progressive and incurable muscle wasting condition Duchennes Muscular Dystrophy, with which Luke was diagnosed when he was four. The majority of sufferers don’t make it beyond their teens.
Most young people can contemplate marriage, a family, a career and contented retirement. By contrast, Luke can’t anticipate the various life paths of middle and old age.
But he’s always looking ahead, with lofty ambitions. For instance, he plays wheelchair football – and his aim is to get into the England team.
But Luke, from Telford, sees a glass that is half full rather than half empty. Spend a few minutes in his company and you will be inspired.
It makes him the perfect ambassador for Hope House, Shropshire’s children’s hospice, based at Oswestry, which he has been attending for 10 years. Luke’s story will spearhead the charity’s Christmas and New Year appeal.
“I’m in a wheelchair but it’s not the be-all and end-all – I just carry on,” says Luke, which perfectly encapsulates the spirit of this remarkable young man. “There is stuff I can’t do but what’s the point of thinking about what you can’t do?”
He is bravely sharing his story in a bid to spread awareness about the vital work of Hope House and its sister hospice Ty Gobaith in North Wales, and to help raise £50,000 this Christmas to reach even more children and families.
Luke says: “I’m lucky to have Hope House in my life. Telling people how they help me and that they need more money now to help even more children is something I can do.”
As part of the campaign, Luke and his parents Justina and Paul feature in a video which you can watch at hopehouse.org.uk/lukes-story and is well worth five minutes of your time.
It is extraordinarily moving and uplifting, emotional responses clearly widely shared. Put it this way – in the three weeks since its release, more than £23,000 has been raised.
What shines through is Luke’s desire to make the most of every day. He loves new experiences. For instance, I chatted to him at the offices of the Shropshire Star, which gave him the chance to see the presses roll, a spectacular sight which he loved.
A keen Manchester United fan, he plays four-a-side wheelchair football for Shifnal Powerchair Football Club. Matches are played at regional level which, for Luke’s team, means regular visits to Birmingham and Nottingham for the four-a-side matches.
“I’ve been playing wheelchair football now for five or six years because football is something I like that I didn’t think I’d be able to do,” says this gently-spoken, articulate young man. “We tackle and crash and it’s pretty cool. My dream is to play for England. I need to play a lot better before that, but I can get there I think.”
The bedrock of Luke’s life is his devoted family, Mum, Dad and little sister Niamh.
Justina had known when her son was born that something wasn’t quite right.
But it wasn’t until Luke was about to start school that she convinced health professionals to listen. A paediatrician carried out tests and mentioned Duchennes Muscular Dystrophy. Justina and Paul researched the condition and were stunned by the bleak prognosis – in a wheelchair by 10 and dead at 18.
Justina recalls: “That was shocking. You always hope your children will do things like go to college, get a good job, find a partner and maybe have children themselves.”
Paul adds: “We thought ‘Why us?’ But then we picked ourselves up and just got on with it. We knew that there was going to be change over time, but at that point he was just Luke. Nothing had changed.”
As Luke grew older and began to use a wheelchair, Paul took on much of his personal care, getting up early to help his son shower and get ready for school, before going to work.
When they were told about Hope House, Paul wasn’t keen on seeing a hospice. Justina visited on her own and was so impressed that she booked a trial weekend stay for her, Luke, Paul and sister Niamh.
“It wasn’t what I was expecting at all,” says Paul. “It was lovely, really chilled and welcoming. There was a radio on and people laughing. It felt like someone’s home and I think that relaxes you.”
Luke agrees: “I come on my own now for respite. It helps Mum and Dad because they know I am safe, I’m somewhere that I enjoy being and kind of independent.”
When Luke was 15 he started being helped by Hope House’s Transition Nurse Rachel Taylor. Her role is to work with young people as they get older, to help them feel more independent.
“Rachel is brilliant and helps me so much,” says Luke.
“She helped get funding for my wheelchair and find out about starting driving lessons,” says Luke. “I know Rachel is always there if I need to deal with things about getting older and the future and it has had a big impact on me.
“I don’t think I would have been able to learn to drive it if wasn’t for Hope House. I wouldn’t have had the confidence. I use hand controls and have a specialist instructor and everything.
“In the future I would like to hopefully work, even volunteering work. Anything to keep me busy.
“I love helping at Hope House too, giving something back. I’ve been asked my advice on the building of a new young adults’ room at Ty Gobaith and things like that.
“Obviously I’m in a wheelchair but tough luck really, no point in moaning about it. There’s a lot of people worse off.
“At the moment I’m on a new drug that hopefully is going to keep me like this. But if it doesn’t it doesn’t. We just have to cross that bridge when we come to it.”
It illustrates the magnificent stoicism so typical of a remarkable lad. He received a heart-rending diagnosis before he’d even started school – and, with his incredible parents, was determined that it would not define his life.
l To help Luke reach his £50,000 goal to help terminally ill local children this Christmas visit www.hopehouse.org.uk/lukes-story or call 01691 671671.
Luke is interviewed in this month’s Shropshire Magazine.