Meet Dylan…

Dylan was diagnosed with Ullrich Congenital Muscular Dystrophy, a life-limiting muscle-wasting disease, when he was just three years old. He also has Scoliosis, a significant curvature of his spine, for which he’s already had to undergo 18 surgeries in his short life.

His conditions mean that he’s no longer able to walk and is in constant pain, relying on regular pain medication and daily physio to ease his discomfort.

Despite his condition, Dylan lives a full and active life, never letting his condition get in the way. He’s become a shining star in the world of Powerchair football after joining St George’s Knights Power Powerchair Football team when he was just 9 years old. His success with his local team saw him get called up for the England Powerchair Football squad where he helped his country win the Joe Barry Home Nations Cup. He’s also received numerous “Top Goal Scorer” awards as well as the prestigious “Player’s Player” award, voted for by his team-mates, for being the best player in the season.

Dylan has been supported by Dougie Mac’s children’s services, formerly The Donna Louise Children’s Hospice, for 9 years. Determined to have as much independence as possible he regularly spends time at Dougie Mac’s Young Adult Unity where he can meet socially with his peers and receive support from our young adult team.

He explains, “I love spending time with my friends at Dougie Mac’s Young Adult Unit. It’s a chance for me to have a laugh and a joke with my mates and with the amazing staff there. Being at the hospice helps me to switch off, I can be myself with no judgement, surrounded by supportive people. It’s one of the only places where I can socialise with my friends in a safe environment.”

Dylan is also a keen photographer and he often shares his arty videos and photos with his dedicated social media followers and has recently begun to use his love of photography as a way to give something back to, and thank, Dougie Mac for the support his whole family have received over the years. In 2022 he attended our Volunteer Thank You evening as our “official” photographer – a great learning opportunity for him and a chance for the hospice to capture pictures of the special event. He also gave up his time to attend and photograph our Jubilee ‘indoor street party’ event at the Young Adult Unit.

Linda McNee, Head of Young Adult Services at Dougie Mac, said, “Dylan is such an inspirational young man with so much determination to achieve his goals, despite the physical challenges he faces. He absolutely has a ‘can do’ attitude and is keen to not only achieve his own independence, but also encourages his peers to do the same.”

Dylan adds, “Dougie Mac is an amazing place and without their care I would not be the person I am today. When my mental health was suffering the hospice helped with providing a counsellor, when I was recovering from surgeries they provided respite. I simply don’t know where I’d be without them.”