First-time mum Justina knew when her beautiful baby 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 Googled the condition and were stunned. The internet said – 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.”

“We thought ‘Why us?’”, remembers Paul. “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.

Visiting a hospice for the first time

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. She, Luke, Paul and Luke’s baby sister Niamh visited.

Paul was stunned: “It wasn’t what I was expecting at all. 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. Her role is to work with young people as they get older, to help them feel more independent.

Nurse Rachel's impact on Luke

“Rachel is brilliant and helps me so much,” says Luke.

“She helped get funding for my wheelchair and find out about starting driving lessons. 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’m in a wheelchair but it’s not the be all and end all – I just carry on. There is stuff I can’t do but what’s the point of thinking about what you can’t do?

“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. 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!

“I’m learning to drive too. I’ve passed my theory already. I don’t think I would have been able to do that 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 at the end of the day. 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.”

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