A Loughborough man who lives with a rare muscle wasting condition is fulfilling a lifelong dream by taking part in this year’s TCS London Marathon on Sunday, 26 April.
Jono Whitehead, 34, was diagnosed with limb girdle muscular dystrophy in 2018 and is a full-time wheelchair user. He’ll join 50,000 runners on marathon day to complete the 26.2 miles, and will self-propel his wheelchair around the entire course, alongside his brother, Mat, 32, also from Loughborough.
Jono is taking on the challenge for Muscular Dystrophy UK, the leading charity for more than 110,000 children and adults in the UK living with one of over 60 muscle wasting and weakening conditions, a charity close to his heart.
Explaining the impact of his condition, Jono said:
“This is a life-long muscle wasting condition, in my case caused by my body’s genetic inability to create the protein dysferlin. Dysferlinopathy, or limb girdle muscular dystrophy, has caused my calf, hip, and shoulder muscles to weaken over time, and I now use a wheelchair to get around the majority of the time.
“I’ve was never very good at sports, and it wasn’t until I received my diagnosis aged 27 that it made sense why. In 2021, I saw an article about a Paralympian from my hometown and was inspired to take up sports. Since then, I’ve tried wheelchair rugby, boccia, frame running, wheelchair racing, seated throwing, and many more. I always dreamed of running, but could never really manage it, but since using a wheelchair, I’ve been so much more active.
“After seeing how many amazing people completed the London Marathon 2025, I couldn’t resist signing up for a marathon place with Muscular Dystrophy UK. This is going to be the most difficult thing I’ve ever done, but it’s going to be worth it. By taking part in and completing the 26.2-mile course, it represents the journey I’ve been on, and having my brother by my side will be an amazing feeling. Hopefully, the money we raise will do some good and help support other people diagnosed with muscular dystrophy.”
Support Jono by donating through his JustGiving page.
For more information about Muscular Dystrophy UK, visit: musculardystrophyuk.org or call the free helpline on 0800 652 6352 (open Mon – Fri 10am – 5pm).
