Henry was diagnosed with Facioscapulohumeral muscular dystrophy (FSHD) 11 years ago, aged 18. He shares how the condition impacts his day-to-day life and why, together with his family, he decided to start a Backyard Ultra Marathon events company.
Since my FSHD diagnosis, I’m focused on staying active in a way that works for me
I was diagnosed with Facioscapulohumeral muscular dystrophy (FSHD) 11 years ago. I remember being in a swimming pool, and my twin brother Ed noticed a ‘bump’ in my shoulder. An X-ray showed that my shoulder blade had moved out of position, but after further tests and multiple appointments, a year later, I was told that I had FSHD.
We were 18 at the time and none of us had ever heard of muscular dystrophy. We’re still not aware of any family history of the condition.
At the time, I wanted to join the Royal Navy, but finding out I had a progressive muscle weakening condition changed those career plans as I knew I wouldn’t have passed the medical. This shaped the way I think about health and the future, but I believe that everything happens for a reason and I was determined not to let my condition define me.
Over the last decade, I’ve found it’s my posture and fatigue that impact me most on a day-to-day basis. I get tired quite quickly and overhead movements are difficult because my shoulders are the most affected. I also experience weakness in my lower back and calves – something I didn’t fully appreciate until I stood in the same spot for three hours at Glastonbury Festival and found that I could barely stand afterwards.
Always been active
From a young age, my brothers and I have always been very active and I love sports – everything from running and gym work to kickboxing. Since my diagnosis, I’ve become focused on staying active in a way that works for me.
I’ve learnt to live with my symptoms and by adjusting certain movements, like limiting overhead lifting, I can continue training. Staying active not only helps me physically, with mobility and overall wellbeing, but also mentally. That’s how PWR Endure came about, and why our first Backyard Ultra Marathon in support of Muscular Dystrophy UK is so important to me.
Doing something meaningful
My three brothers, Ed, Ollie and Will, cousin, Rupert, and I are all into our fitness and decided we wanted to try an ultra-marathon concept. Last summer, we set up a mini version of the event to test with friends and family, and the atmosphere was buzzing, everyone loved it. Our event company, PWR Endure, was born from that and now we plan to specialise in Backyard Ultra Marathons, building a community around determination, fundraising and endurance.
The first Backyard Ultra is taking place in the grounds of Tockington Manor in Bristol, close to where we live, over the weekend of 23-24 May 2026.
It’s about my family and I doing something meaningful that will challenge us and others – creating an environment where people can challenge themselves but also be part of a supportive community. Supporting Muscular Dystrophy UK at the same time just made sense as we can use the platform to raise money for an important cause and hopefully increase people’s understanding of FSHD and other muscle wasting conditions.
How a Backyard Ultra Marathon works
The Tockington Manor Backyard Ultra kicks off at 10am on Saturday 23 May and 134 people have signed up to take part, aiming to cover 125 miles across 30 hours. The rules are simple: each runner starts the 4.167-mile loop at the top of every hour. Finish inside the hour and you can continue, taking any rest time before the start of the next lap. Miss the cut-off and your race ends.
Henry will be taking part in the Tockington Manor Backyard Ultra, as well as helping to manage the event.
Find out more about PWR Endure
By supporting a PWR Endure event, you’ll be helping to raise funds and awareness for individuals like Henry living with a muscle wasting condition.
Inspired by Henry’s story?
There are so many ways you can fundraise for people living with a muscle wasting or weakening condition. No idea is too big or too small.
