Charley’s More Than Muscle aims to raise awareness of limb girdle muscular dystrophy, fund research, and support others living with muscle wasting conditions.
Charley’s More Than Muscle
My story
Growing up, I was never the fastest at sports and found running much harder than others. But my family and I never imagined it would lead to a life-changing diagnosis.
After years of hospital appointments and tests, I was diagnosed with limb girdle muscular dystrophy. Being told not only that my condition was incurable, but also progressive, felt like being told everything would be downhill from there. I hit rock bottom mentally.
Since then, my family and I have lived through every stage of grief together. With a progressive disability, you constantly grieve your body and what it once could do. The challenges never stop, it’s constant adapting, constant battles, and constant change.
But through it all, my family and friends have been my biggest support system. Together, we’ve built so much resilience, humour and strength, and we try to live in the moment rather than fear the future. I remind myself often: if you can’t change the situation, change how you react to it.
My goals
It’s also about turning a difficult diagnosis into something positive, building community, and reminding people that disability is about ‘more than muscle’.
I hope to spread awareness via a variety of fundraising activities. I want to build my Instagram to create a positive and supportive community that will educate others on the struggles that I, and many others, face daily.
Support Charley’s More Than Muscle
Fundraising will be split 80/20 between MDUK’s research into limb girdle muscular dystrophy and to help support Charley’s future welfare needs.
Follow the story
Support Charley’s More Than Muscle by following on social media.
