A North Yorkshire family are on a walking mission to complete over 5,000 miles, marching for muscular dystrophy. The Taylor family, along with friends, family and work colleagues from airline and tour operator, Jet2, will collectively cover the distance between all of Jet2’s UK airport bases across the country to Sharm el-Sheikh in Egypt (5,458 miles).
Walking 5,000 miles for Jack
Fundraising father, Steve Taylor, discusses the importance of the challenge and the family’s motivation after son, Jack, 13, was diagnosed with Emery-Dreifuss muscular dystrophy.
The diagnosis journey
For the past eight years, we’ve been on a journey and in November 2025, we finally received Jack’s long-awaited diagnosis.
It was around the age of five that we noticed Jack wasn’t the same as everyone else. We thought it was his ‘bendy legs’ or perhaps he wasn’t as strong as others.
We constantly visited our local GP looking for answers. They agreed they could see things weren’t right but couldn’t identify what was causing it. We travelled across the country from London to Newcastle speaking to genetic experts. Jack got an initial diagnosis of muscle myopathy.
We were referred to a neuromuscular centre at Leeds General Infirmary (LGI) and he continued having blood tests, examinations, and assessments. Jack was having annual checks with different consultants.
He’d get prodded and poked, told to stand up and sit down, and have a variety of tests done to monitor progress. Finally, he had a muscle biopsy and the whole family had genetic testing. It was then we were told he had Emery-Dreifuss muscular dystrophy.
We now know that my wife, Jill, was a carrier of the gene and her dad, John, had the condition but never knew. He had a stroke in his early forties. A lot of his problems, we thought were down to this, however it was all connected to the condition. He sadly died of a heart attack aged 56.
Receiving the call
The consultant called inviting us to the clinic the next day. We were advised not to bring Jack. We stopped in our tracks. Jill went into mass panic. When they told us it was muscular dystrophy, it was like we’d been hit with a baseball bat. It was a complete shock.
It was a lot for Jack to comprehend; he went quiet and was curious to know what the outcome meant for him. As parents, we had to manage what to tell him and how the condition was going to affect his mobility.
We tried to reassure him and focus on the positives, encouraging him to live his best life, as we don’t know what the future holds. He’s showing the textbook symptoms of the condition and with that it may bring heart complications.
Hidden disability
After all these years of uncertainty, Jack can finally say ‘I’ve got muscular dystrophy’. Jack’s passionate about raising awareness of his hidden disability, as not every disability is visible. Looking at Jack, you can’t tell there is anything ‘wrong’. But if you were to watch him walk, you’ll notice that his feet droop and he walks toe first when he puts his foot down due to stiffness in his ankles.
He tires quickly, is only able to run short bursts, and can’t go long distances. He doesn’t have the strength in his upper body so even holding a kettle to make a cup of tea is a huge challenge.
Jack has been judged his whole life. Now he wants to educate people and encourage them not to judge others.
He’s now in Year 9 at secondary school and is thriving, which is fantastic to witness as a parent. It was a completely different experience with his primary school. He got bullied and the school just didn’t understand his condition. But his secondary school has embraced him. He feels included and is no longer isolated because of his condition.
Looking to the future
Jack’s a young fun-loving lad. He loves golf, music, Air Cadets and cricket – recently winning ‘most improved player’ and plays with the Yorkshire Disability Cricket team. He’s doing his Duke of Edinburgh Award, which was always going to be a challenge. However, he’s not one to sit on his laurels.
When he grows up, he’d love to be a commercial airline pilot. Depending on whether he’ll be able to hold a Class 1 medical. If not, something in music for sure.
The challenge
When Jack was diagnosed, he wanted to do a sponsored walk, so the idea stemmed from him, and we wanted a big target to make it a challenge.
I work for the leading leisure airline and UK’s largest tour operator Jet2 so looked at the furthest destination they fly to from the UK, which is Egypt and calculated the mileage between all their UK airport bases across the country and Sharm el-Sheikh. We worked out that to cover the same distance (5,458 miles); everyone needs to walk 1.3 miles a day from January to May to complete the challenge.
Jack’s walking to and from school clocking up the miles daily. At weekends, we’re doing family walks with me, Jill, Jack and his two younger sisters.
We chose to fundraise for Muscular Dystrophy UK, as it’s the only charity that supports Jack’s condition. I’m so grateful to everyone who is giving up their time to be part of the challenge and truly touched by the generosity of people every time someone sends a message or donates.
Support the family's challenge
By supporting the Taylor family’s efforts, you’ll be contributing to research and support for individuals like Jack living with muscle wasting conditions.
Inspired by this 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.
