Hi, my name is Henry, and I live with FSH Muscular Dystrophy. Although my symptoms aren’t severe, being diagnosed has had a significant impact on my life and shaped the way I think about my health and future.

My shoulders are the most affected, with noticeable scapular winging when I lift my arms, making overhead movements unstable. 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 could barely stand afterwards.

Growing up as one of four brothers, I lived a very active life, and I’ve refused to let my diagnosis change that. I continue to train through kickboxing, running, and gym work. Staying active gives me longevity, physical mobility, and overall wellbeing - not just physically, but mentally too. With a strong mindset, this disease doesn’t define me. I don’t put my life on hold or bow down to it; instead, I use it as a source of strength to push myself further.

Wanting to do something meaningful, my brothers Ollie and Ed, along with our cousin Rupert, and I decided to take on a project that would challenge us and others. We’re bringing the Backyard Ultra concept to the North of Bristol to create an environment where people can truly push themselves, discover resilience, and be part of a supportive community.

At the same time, we’re raising funds for a cause that’s incredibly close to us. This event isn’t just about running - it’s about empowerment, connection, and supporting everyone affected by muscular dystrophy.

I want others in similar positions to know that you don’t have to let this condition hold you back. Stay active in a way that works for you, stay hopeful, and keep moving forward.