On Saturday 12 October, Paul McGann and his friend Dan Cooper set off to Africa to climb the world’s highest freestanding mountain, Kilimanjaro. Inspired by Paul’s 15-year-old son Frankie, who lives with myotonic dystrophy, the pair have raised over £11,000. Paul explains why they’re taking on this trekking challenge.
Climbing Mount Kilimanjaro for Frankie
My son Frankie is 15 now but was diagnosed with myotonic dystrophy when he was just seven months old. We knew he wasn’t reaching development milestones as normal, but no one had any idea why. At the time my wife was pregnant with our second child, so it was quite a shock to find out about this rare genetic condition in the family. I’m doing this trek to help raise awareness and money for Muscular Dystrophy UK so that they can continue funding groundbreaking research to understand more about muscle wasting conditions and find new treatments.
Following Frankie’s diagnosis, my wife, her sister and her father were also diagnosed as having a variant of myotonic dystrophy, albeit less severe.
“The diagnosis has had a huge impact on all our lives.”
But it has also helped explain some of the lifelong muscle weakness and tiredness they all feel.
My friend, Dan Cooper, will be joining me on the Kilimanjaro Trek. We’ve known each other for 30 years and did the Pedal Paddle Peak challenge together in the Lake District in 2022 to raise money for Muscular Dystrophy UK. When we found out about the Kilimanjaro Trek, we were both keen to sign up.
Dan is a great family friend and a big champion of Frankie. Our birthdays are close, so we often celebrate them together. In fact, this year Dan’s birthday will be on the way up Kilimanjaro and mine will be celebrated when we get back down to the bottom, so quite a life experience!
As part of our training, Dan and I climbed Snowdon last month, but as Kilimanjaro is five times higher, we know this challenge is on another level. However, we have Frankie as our inspiration. And he’s an inspiration to all who know him. He’s never daunted by a big physical challenge and continues to defy expectations of what is possible.
One of my proudest moments was supporting Frankie last year to climb the Old Man of Coniston in the Lake District as part of my training. At 803m high, it’s a significant peak and getting up involved a lot of effort but was a huge achievement for him.
“In general, Frankie leads a full and happy life and never wants to be treated any differently to his younger brother, so we regularly embark on family adventures like indoor climbing and long bike rides.”
Regular physiotherapy and splints help to keep Frankie mobile, but he has very weak muscles that even make smiling almost impossible. As he gets older, we know that his muscle weakness will have an even greater impact on daily life, from mobility to eating, but he remains determined to be involved in whatever capacity he can.
Dan and I are doing this trek for him. Pushing ourselves to the limit so that we can increase awareness of conditions like Frankie’s and raise money so that Muscular Dystrophy UK can continue to fund research and support people living with muscle wasting conditions.
Support Paul and Dan's fundraising
By supporting their efforts, you’ll be contributing to crucial research and support services for individuals living with muscle wasting conditions.
Inspired by Paul and Dan's story?
Find out more about upcoming challenge events, including a Ben Nevis Trek in September 2025.
