Leighton always has a smile on his face, especially when he gets to spend time at Bluebell Wood with his brothers, Carson and Leo. Mum and dad, Kerry and Steven, share his story.

Kerry said, “Ever since he was little, we thought Leighton was a little stiff and not very flexible; we used to joke that he was just like his dad. But then we started noticing that he couldn’t ride his bike, and he would walk really slow and drag his feet when we went for walks. He never really walked upstairs; he always crawled up like a toddler, that’s when we knew something wasn’t quite right, and we started going back and forth from the doctors. The doctors even checked his hips to see if he had a hip displacement. We didn’t realise at the time, but these were tell-tale signs of Duchenne Muscular Dystrophy.”

Leighton was finally given a diagnosis when he was five and a half. We visited the hospital and they sent him for a blood test on the Friday, and the next day the hospital rang to arrange another blood test. The following week his mum and dad were told the devastating news about his condition. Steven said, “The day we actually got the diagnosis is a blur. I remember watching the doctor’s mouth move, but not hearing anything. We had been worried about Leighton for a long time, but we hadn’t expected that.”

Duchenne Muscular Dystrophy is a muscle wasting disease, which was caused by a rare mutation in the X-chromosome of Leighton’s DNA. Steven explained, “It’s almost like having a car without shock absorbers. Just simple things like reaching for objects can be a real challenge because there is nothing to soften the impact. His condition affects every muscle in his body; his heart, his lungs, everything. It means that just breathing or his heart beating is causing scarring.”

Kerry added, “Things like getting dressed can be a real struggle for Leighton, so I have to do that for him. He can’t do stairs either, so we’ve moved his bedroom and bathroom downstairs to make it easier for him. Willow, our Border Terrier, sleeps with him at night and she’s always there for company. He’s happy and that’s all that matters.”

Kerry and Steven heard about Bluebell Wood when Leighton was diagnosed, but at first they were worried about what it would be like. It wasn’t until Leighton was nine that they decided to take that next step and visit the hospice for the first time. Steven said, “I wasn’t sure at first, I was expecting it to be like a hospital with children attached to machines, but it’s not like that at all. You’re made to feel so welcome – there’s a big sense of belonging and fun. Looking back, we should have come earlier!”

From pantos and painting sessions to special visits from our local football teams, Leighton and his brothers love all the fun activities and events at Bluebell Wood. Kerry said, “The boys love coming here, and I think it’s really good for them. Leo goes to the sibling group and he really enjoys it. Sometimes it can be difficult for him when the focus is on Leighton so the group is great because it’s something that is all about him.”

Kerry and Steven also enjoy getting to know other parents who are going through the same things that they are, and they see one of our Counsellors at the hospice. Kerry said, “It’s so nice to talk to other families; we’re all facing similar challenges, and it’s fantastic to get things off your chest when times are tough. Families really do come together.

“The counselling sessions help us a lot too. We got to see the Counsellor straight away – there wasn’t any waiting around. There’ve been times at other places when we’ve been on a waiting list, but not here. It was what we needed, at a time when we needed it most.

“Everyone here goes the extra mile and absolutely nothing is too much trouble. The counselling, the fun times like pantos and all the events; there really is no end to their support. Bluebell Wood is always trying to do something for families, and help us have a normal, happy life.”