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 Ullrich and have raised an incredible £200,000 so far. Now a young adult, Jed is keen for his story to inspire others.
I was diagnosed with Ullrich congenital muscular dystrophy at the age of 8 and was told that I would likely be in a wheelchair by the age of 12. However, even at a young age, I was determined not to let my condition dictate my everyday life.
After moving to Berkhamsted Collegiate at 13, I went on to become Head Boy and graduated from Nottingham University with a degree in Economics and Politics. I now live independently in central London, working in sales.
Throughout school, I got involved in whatever was available to me and faced challenges head on. I quickly developed a cautious sense of wisdom and realised that playing rugby — a sport I loved — was perhaps not the safest choice. Instead, I started going to the gym and took up running, creating a daily routine of weightlifting and healthy eating. Over time, this enabled me to build muscle and increase my confidence. I trialled and tested different workout and nutrition routines, lifting heavier weights and developing more muscle, which massively improved both my physical strength and self-esteem. This has led me to start my own protein drinks company called JUCED.
Like many teenagers, I struggled with body confidence at times, but the key for me during that period was finding a balance between health and wellbeing. I had to understand the limitations I faced and reset the expectations and goals I had previously set for myself. To this day, simple things like walking upstairs or getting up from the floor can still be challenging, but thanks to my weight training and diet, I now have the physical and emotional resilience to deal with these obstacles. As I often say, “Every now and then you have to go outside your own comfort zone.”
My achievements are a testament to how far I’ve come from what doctors now believe may have been a misdiagnosis of Ullrich. My independence and positive attitude, as my dad Michael Thirkettle says, come from my strength of character. Being diagnosed at a young age taught me to always keep things in perspective, keep moving forward, and make the best of every situation. I hope that my story will inspire other young people to maintain a positive mindset and realise what is possible.
