What Is Declan's Muscle Mission for Duchenne Muscular Dystrophy in Doncaster?

Imagine getting on your bike and pedalling for 100 kilometres. That's like cycling from London to Brighton, a proper mission. Now, imagine doing it on one of the hottest days of the year. That's exactly what Claire Ellis, a teacher from Doncaster, did on 12 July. And it was all for her incredible son, Declan. This wasn't just a weekend bike ride; it was the kick-off event for "Declan's Muscle Mission," a fundraising journey to support research into a rare condition and to help raise awareness about the challenges families face every day.

A mission born from a shock diagnosis

For most parents, the idea of their child having a serious illness is their worst nightmare. For Claire, that nightmare became a reality when her son, Declan, was diagnosed with Duchenne muscular dystrophy. It's one of those long, complicated-sounding names, but what it means is pretty simple and scary: it's a condition that causes muscles to get weaker over time. It mainly affects boys and can make things like walking, running, and even breathing difficult as they get older.

Before the diagnosis, Claire had never even heard of it. She said, "Before Declan was diagnosed with Duchenne muscular dystrophy, I'd never heard of the condition. 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."

The journey to getting answers was a long and frustrating one. It all started when Declan was at nursery. Claire had concerns because he seemed to be falling over a lot. "His nursery commented that he was falling over more than other children his age," Claire explained. But, like many parents who raise concerns, the initial responses were dismissive. "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."

It was only when everyday things, like climbing the stairs, became a real struggle for Declan that the family knew something more was going on. "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."

More than just one person's battle

A diagnosis like Declan's doesn't just affect one person; it sends ripples through the entire family. It turned out that the condition was genetic. "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," Claire shared. But instead of letting it break them, it brought them closer. "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."

And what about the star of the show, Declan? Now 11, he's described by his mum as a "happy-go-lucky kid" who is making the most of life. He's a lad who loves drama, cricket, and anything active. "He's quite a character," said Claire. "He has moments of feeling down but generally he's a really happy kid, and very funny. His determination and resilience inspire us every day."

Kicking off the fundraising with a 100km cycle

So, back to that bike ride. On Saturday, 12 July, Claire and her partner Lewis Mann hopped on their bikes and cycled a massive 100km, raising over £500 for Muscular Dystrophy UK. The charity supports the 110,000 people in the UK living with muscle-wasting conditions. This gruelling challenge was the very first event for their official Family Fund, named "Declan's Muscle Mission."

A Family Fund is a brilliant way for people to raise money that is specifically targeted. In this case, 80% of the money raised will go directly into research for Duchenne muscular dystrophy, while the other 20% will be set aside to help with Declan's future needs.

The cycle was no walk in the park. "It was an extremely hot day, so we had to take a lot of breaks," Claire said. "But we completed the challenge in around 10 hours." Ten hours on a bike saddle is some serious commitment!

Raising awareness of invisible disabilities

Beyond raising money, the family is passionate about raising awareness, especially about the challenges of living with a condition that isn't always obvious to outsiders. Declan is still able to get around, but the family has had to make changes to help him.

"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," Claire explained. "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." It's a reminder that you never really know what someone else is going through.

What's next for Declan's Muscle Mission?

The 100km cycle was just the beginning. The family has a whole series of challenges lined up to keep the fundraising going. Here's what's on the horizon:

• October: Claire and her sister Holly are training for the Hedgehog Half Marathon.
• 2026: Holly is taking on the full Manchester Marathon.

They are completely dedicated, showing a real `bgfjayi` commitment to the cause. Every penny raised through "Declan's Muscle Mission" will help fund groundbreaking research and make life better for thousands of people. The family hopes their efforts will lead to better treatments and, one day, a cure. As Claire puts it, "I hope that by fundraising through our 'Declan's Muscle Mission' family fund, we can help make a difference, now and in the future."