On 12 July, Claire Ellis cycled 100km in support of her son Declan, 11, who lives with Duchenne muscular dystrophy. She was joined by her partner Lewis, and the pair raised over £500. But this is just part of the family’s fundraising journey as they have set themselves a series of challenges. Claire explains why they started ‘Declan’s Muscle Mission’.
Cycling 100km to kickstart fundraising for ‘Declan’s Muscle Mission’
My son Declan is quite a character. He has moments of feeling down but generally he’s a happy-go-lucky kid, and very funny. He loves drama, cycling, cricket and anything active. His determination and resilience inspire us every day.
I’d never heard of Duchenne muscular dystrophy before Declan was diagnosed at the age of eight. It came as a huge shock and quickly became clear, through research and speaking with his neuromuscular team, that our lives had been turned upside down. But I’m determined to do everything I can to support Declan.
“It’s important to me and us as a family to do our bit to help towards vital research into Duchenne muscular dystrophy. Not only for Declan but everyone else living with the condition.”
Declan had been seeing a paediatric consultant for several years prior to his diagnosis after I raised concerns that he was falling over a lot. It started when his nursery commented that he was falling over more than other children his age. But when we raised it with the health visitor, it was put down to him being adventurous. Then when he started school and it was flagged again that he was ‘extremely clumsy’, we were told that he most likely had dyspraxia.
When stairs started to become an issue for Declan, that’s when I really noticed that it was more than just being clumsy and falling a lot. Just before Declan’s eighth birthday, the doctor decided to run some blood tests, which led to some further tests and a diagnosis of Duchenne muscular dystrophy. It came as a shock to us all. There were mixed emotions, including a slight element of relief that, after waiting so long for a definitive diagnosis, we now knew what we were dealing with and could support Declan in the best way.
His diagnosis also sent shockwaves through our wider family, as myself, my mum, and my sister all found out we are carriers of the gene. But as a family, we’ve come together and are stronger than ever, and we’re determined to work as a team to support Declan.
We’ve taken part in sponsored swims, bike rides and the Pedal Paddle Peak challenge in recent years, and in July we set up a Family Fund in Declan’s name, ‘Declan’s Muscle Mission’.
This enables us to fundraise as a family towards research into Declan’s condition, as well as putting aside 20% of the funds for his future welfare and support needs.
To start off the fund, my partner Lewis and I decided to take on a 100km cycling challenge. It was an extremely hot day, so we had to take a lot of breaks! But we completed it in around 10 hours.
In addition to supporting vital research into Duchenne muscular dystrophy, we also want to help raise awareness so that people understand more about muscle wasting conditions.
Declan is still mobile and loves riding his bike. As his condition has progressed, we’ve adapted things slightly, so he now has an electric bike, and we take his wheelchair out with us if we know it’s going to be a long day as he struggles with longer distances. But we’ve found there’s a real lack of understanding around this as we often get funny looks when parking in a disabled space with our blue badge as there’s an assumption that because he can get in and out of his wheelchair that we’re somehow cheating the system. It’s sad and lots of people with more invisible disabilities must go through the same thing.
“I hope that by fundraising through our ‘Declan’s Muscle Mission’ family fund, we can help make a difference, now and in the future.”
This 100km cycling challenge was the first of many fundraising activities we have planned. My sister Holly and I are currently training for the Hedgehog Half Marathon in October, and Holly is running the Manchester Marathon in April 2026.
Support ‘Declan’s Muscle Mission’
By supporting Claire and her family’s efforts, you’ll be contributing to crucial research for individuals like Declan living with Duchenne muscular dystrophy.
Inspired by Claire’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.
