Leeds team take on challenge in support of friend's son who lives with muscular dystrophy
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The group of 12, ‘Team Zenith’, did the challenge for Muscular Dystrophy UK – the leading charity for the 110,000 adults and children in the UK living with one of over 60 muscle wasting and weakening conditions, in support of their friend and colleague, Helen Naylor, whose son Eben, 5, lives with Ullrich congenital muscular dystrophy (UCMD).
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Hide AdExplaining why she chose to sign up for Pedal Paddle Peak, Anna Hobbs said: “Helen and I met at work over seven years ago and have become close friends. We’ve been through a lot together, including her journey with Eben’s diagnosis, which started shortly after birth when he was immediately under the care of physios, neurologists and other NHS teams. I remember meeting Eben when he was just a few days old and while the family knew something was wrong, it took over two years to get the diagnosis. Since then, I decided I wanted to do as much as I could to help. I did the Great North Run with Helen for Muscular Dystrophy UK in 2022 and when I saw this unique challenge, I knew I had to do it.”
Anna was joined by 11 colleagues from Zenith for Pedal Paddle Peak – Katie Atherton, Alan Bastey, Elizabeth Bennett, Rachel Braithwaite, Katie Gant, Emma Harrison, Callum Horn, Sam Pickup, Laura Shackleton, Sean Skippen, and Olivia Unsworth. The team raised over £7,400 for Muscular Dystrophy UK to support the ‘A Wish for Eben’ family fund, with 80% going towards research into Ullrich congenital muscular dystrophy and 20% to help support Eben’s future welfare needs.
“It wasn’t hard to get a team together,” said Anna. “We’ve all worked with Helen at various points over the last few years and know about Eben’s condition. Some of us have done challenges for Muscular Dystrophy UK before and others are new to the charity, but we all want to support Helen, Eben and the rest of the family, as well as this great cause.”
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Hide AdEben was diagnosed with Ullrich congenital muscular dystrophy (UCMD), a rare muscle weakening condition, when he was two and a half years old. “It was a huge shock when Eben was diagnosed,” said Eben’s mum, Helen Naylor. “We’ve spent the last three years coming to terms with this as a family and adapting to what our ‘new’ life looks like. Eben’s condition means he’s unable to walk as UCMD affects his strength, so he uses a trike to get around at home and school, as well as having a power wheelchair for longer outings. We know that Eben is also likely to face respiratory issues, muscle contractures and scoliosis later in life. Sadly, there is no cure for the condition but the promising research that is being done gives us hope.
“I’m so grateful to Anna and the rest of the team for taking on this Pedal Paddle Peak challenge for Muscular Dystrophy UK. Support like this not only helps Eben and us as a family, but also the thousands of others across the UK who are living with a muscle wasting condition.”
The ‘Pedal Paddle Peak’ Lake District challenge started in Penrith with a 15-mile cycle followed by a two-mile canoe paddle on Ullswater Lake. Once back on dry land, teams cycled to the base of Helvellyn to complete the ‘Peak’ part of the challenge – climbing to the mountain peak, before getting on their bikes again for the final 15-mile pedal to finish back in Penrith.
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Hide AdExplaining why she was keen to get involved, team member Rachel Braithwaite said: “I like to give myself a challenge, and if I can do this while raising money and awareness for Muscular Dystrophy UK, even better. I hadn’t heard of the condition until Helen’s son was born and she spoke of it. Helen had Eben two months after I had my little girl, Sadie, and it hits home to realise how much we take for granted. To be able to do something for Eben and his family, as well as helping other individuals who live with Muscular Dystrophy, makes the challenge more worthwhile.”
To support ‘Team Zenith’ visit justgiving.com/team/teamzenithppp
The new Pedal Paddle Peak – Snowdon (Yr Wyddfa) is taking place in September. The event is sold out but join the waiting list or find out about other challenges at musculardystrophyuk.org/get-involved/events
Find out more about Muscular Dystrophy UK at musculardystrophyuk.org
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