On Thursday 28 August, Sam Taylor, his wife Sue, and daughter Beth will set off to start ‘Iron Will 2025’, a long-distance triathlon consisting of a 7.5-mile paddleboard, 50-mile mountain bike ride and 26.2-mile trail marathon run in the Lake District. Sam created this challenge – the latest in a long list – in support of his eldest son Will, 16, who lives with Duchenne muscular dystrophy, and the trio will be joined by around 40 friends and family. Sam explains the family’s motivation for fundraising.
“It’s possible to make a difference now for people like Will”
Our eldest son Will was four when he was diagnosed with Duchenne muscular dystrophy. He was slow to reach key development milestones, and we noticed that he was struggling to get up from the ground as easily as his peers. After a year of appointments, we received the diagnosis in 2014.
“We knew there was nothing we could do to change the situation, so raising money to fund research became our way of fighting back and making a difference.”
Ten years on, and with a fundraising total in excess of £260,000, we’re proud of the community we’ve created. When our fundraising and challenges first started, it was purely about raising money. Now, the community that these events have created is just as important. We have a strong network of friends and family who are there for us, and act as great role models for our children, Will, Beth and Barney.
My wife Sue was the first person in the family to start fundraising for Muscular Dystrophy UK when she signed up for the Great North Run immediately after Will’s diagnosis in 2014. The following year, I set up a group ride from Land’s End to John O’Groats, then a Coast-to-Coast Triathlon in 2017, and a Longest Steepest Highest Quadrathlon in 2019.
In August 2021, myself, Sue and some friends cycled 380 miles between four of the UK’s major Duchenne muscular dystrophy research centres on the Duchenne Research Relay, to shine a light on the groundbreaking work that scientists in the UK are doing to find treatments. The most recent event was the first Iron Will in 2023 – an Ironman distance triathlon (2.5-mile swim, 112-mile road bike and 26.2-mile marathon) based around Ambleside.
“Iron Will 2025 promises to be even tougher. Many of the participants have learned to Paddleboard to take on the event.”
The shorter cycle is offset by the elevation and rocky terrain the riders will encounter in Whinlatter Forest, and the marathon is even hillier than two years ago.
Since Will’s diagnosis, we’ve prioritised living for the now and ensuring that Will can live his best life. He’s a very creative, sociable, determined young man and loves being part of all the challenges we do.
Our focus was always on raising money to accelerate research into treatments. To begin with, we thought this would be for the next generation, to help future families facing a similar situation. But when the treatment givinostat was conditionally approved at the end of last year and Will started on a trial, we realised that it is possible to make a difference now for people like Will. It’s not a cure, but if we can hold him at his current level, he can do more of the things he enjoys, for longer. That’s why we’ll keep going, to raise more money so that research can continue.
For the first time, Will’s older sister Beth, 17, is also taking part with us and is keen to help raise awareness and funds.
Beth said: “In 2014, my not-so-little brother Will was heartbreakingly diagnosed with Duchenne muscular dystrophy, a condition which currently has no cure. Due to this being such a rare condition, and me being a protective big sister, the feeling of ‘why him?’ was prominent. However, Will’s drive and determination to keep going despite every hurdle thrown his way inspired me to quit asking ‘why?’ and join my family to actively make a difference.
“Previously, I’ve always been in the support team, but this year I think it’s about time I give my best shot at this challenge for Will, and all those affected by Duchenne. I can’t say I will be smashing out the entire thing, but I will be giving it my all to make that change for my younger brother and every other incredible person and their families coping with this condition every day.”
Support Iron Will 2025
By supporting Sam, Sue and Beth’s efforts, you’ll be contributing to crucial research for individuals like Will living with Duchenne muscular dystrophy.
Inspired by the Taylor family'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.
