Luke Baker, 31, ran his first half marathon. This would be a challenge for most people, but even more so for Luke who lives with Charcot-Marie-Tooth disease (CMT), a rare progressive condition which affects peripheral nerves causing muscle weakness.
Having previously limited his runs to around 5km, in January 2025 he decided to challenge himself to run the Manchester Half Marathon, allowing ten months to train.
Joined by his partner Cameron O’Ware, they raised £2,820 for Muscular Dystrophy UK, the leading charity for the 110,000 people in the UK living with one of over 60 muscle wasting and weakening conditions, to help fund research into Luke’s condition.
Luke set himself a goal of running the 13.1 miles in under two and half hours and achieved this, completing the Manchester Half Marathon in 02:29:16. “It was a vague time goal, but I’m thrilled that I made it, with 44 seconds to spare!” said Luke. “However, I’ve never felt more acutely aware of living with CMT. Not just the pain, which was constant, but really feeling the limits of my own body while seeing so many others able to go quicker and more steadily.”
Explaining how Charcot-Marie-Tooth disease (CMT) impacts his day-to-day life, Luke said:“For me, CMT means I struggle with my balance and coordination as well as experiencing daily aches and pains. Simple things like walking any real distance, climbing stairs, or even just standing for extending periods, can be a challenge. There is currently no cure, so for me it’s about adapting, keeping on top of the pain, and raising money to help fund research.”
Luke was diagnosed with CMT around the age of 10, after his mum and teachers noticed he walked with a limp and was always dropping things. “My feet were, and still are, my main issue,” said Luke. “I had a number of medical procedures growing up, mostly to help strengthen my feet, but these had limited success. I struggle with pain almost every day, especially during prolonged exercise. At school, this meant sitting out of some activities and I also had issues with my hand cramping if I had to write for too long, making exams hard.”
As an adult, Luke has encountered a lack of knowledge and understanding around his condition. But he’s determined to use this as an opportunity to educate people and raise awareness of hidden disabilities.
“I think there’s a real stigma around hidden disabilities, which can be hard to navigate at times. Because my condition isn’t immediately obvious from looking at me, I sometimes feel judged. For example, having a blue badge in my car. But I try to call it out if I see it and take the opportunity to educate and therefore hopefully reduce judgement on others. Challenging stigma is important. This type of judgement doesn’t just impact me but many other people living with different conditions that may not be immediately visible.”
When it comes to running, Luke has done some in the past, but this was the longest distance he has ever attempted. He signed up for the Manchester Half Marathon in January, giving himself ten months to train. When Luke’s partner Cameron agreed to take on the challenge with him, he suggested they do it in support of Muscular Dystrophy UK.
“Previously, I’ve always tapped out of training when I got to around the 5km mark as the pain felt like it was too much,” said Luke. “But this year, I made the decision to challenge myself to push well past it. I took it slow and gave myself ten months – longer than is usually needed to train for a half marathon. I’m prone to injuries and need extra rest but I kept on top of any difficulties with pain relief, stretches and physio exercises, as well as occasionally using foot supports.
“I was excited in the run-up to the event, and despite the pain, which was excruciating at some points, the day itself was a really enjoyable experience. I’m glad I took the training slowly as that meant I had time for extra rest when I needed it, and I think that would be my main piece of advice to anyone thinking of doing something like this if they’re living with a condition like mine. Allow more time and look after yourself. It takes as long as it takes!
“I’m so grateful to Cameron for joining me for this challenge. He’s been really supportive, and it’s been great to do this together. Also, some of my work colleagues ran too. The journey was definitely tough, and I’ve had to adapt and push my limits in different ways. But it’s been so rewarding and I’m proud of what we achieved. Thanks to the generous donations of our friends and family, we’ve raised over £2,800 for Muscular Dystrophy UK, and it’s incredibly gratifying to know that this will help other adults and children who struggle with neuromuscular conditions.”
Support Luke and Cameron at https://www.justgiving.com/
