Skip to content

Michael and Donna Thirkettle’s son Jed was diagnosed with Ullrich congenital muscular dystrophy when he was eight years old. They set up Team Jed, to raise awareness and funds for Muscular Dystrophy UK’s Ullrich CMD Appeal and have raised an incredible £200,000 so far. Now a young adult, Jed is keen for his story to inspire others.

At the age of 8 Jed Thirkettle was diagnosed with Ullrich congenital muscular dystrophy, and told he would likely be in a wheelchair by the age of 12. However, even at this young age Jed was determined to not let his condition dictate his everyday life.

After moving to Berkhamstead Collegiate at 13, he went onto become Head Boy and has recently graduated from Nottingham University with a degree in Economics and Politics. He now lives independently in central London, working in sales and commuting to the office twice a week.

Jed went through school taking everything in his stride, getting involved in whatever was available to him, and facing challenges head on. He did have to develop a cautious wisdom, and it was soon pretty clear that playing rugby, a sport he loved, with his ever growing friends was perhaps not the safest choice. Instead, he started going to the gym and took up running, creating a daily routine of weightlifting and eating healthily. This gradually enabled him to build muscle and increase his confidence. He trialed and tested various workout and nutrition routines, lifting heavier weights and developing more muscle, which massively helped with his physical strength and self-esteem.

All teenagers struggle with body confidence at some point, but the key for Jed during this tricky time was to find a balance between health and well-being. He had to understand the limitations he faced, and reset the expectations and goals he had previously set for himself. To this day, simple things like walking up stairs or getting up from off the floor are still a challenge for him, but thanks to his weight training and diet, he now has the physical and emotional resilience to deal with these obstacles. In his own words “Every now and then you have to go outside your own comfort zone.”

His achievements are a testimony to how far he’s come from what doctors now believe to be a misdiagnosis of Ullrich. His independence and positive attitude – as dad Michael Thirkettle says – is down to his incredible strength of character. Having been diagnosed at a young age, Jed learnt to always put things in perspective, keep moving and make the best of every situation. Jed is hoping that his story will inspire other young people to keep a positive mindset to see what can be possible.

We would like to thank Jed and his family for their continued support of MDUK and for being brave enough to share his inspiring story. Team Jed is continuing to support research at MDUK.

Join the Muscular Dystrophy UK community

Share your experience and find advice from others with similar conditions.