Put simply, inspired by my son, Freddie.
In 2023, just two days after his 3rd birthday, Freddie was admitted to Leeds Children's Hospital with what turned out to be a rare autoimmune disease called Juvenile Dermatomyositis, which falls under rheumatology. This illness attacked and destroyed his muscle fibres so aggressively that he went from running and playing to barely being able to move at an astonishingly quick rate.
After seven months of uncertainty and tests, a life-saving diagnosis led to the right treatment path for Freddie at Leeds Children's Hospital and intensive specialist physiotherapy at Great Ormond Street. Together, these treatments not only saved his life but helped him get out of the wheelchair and walk again! In 2024, he started school — a milestone that at one point felt impossible.
The journey hasn't been easy. Freddie has endured countless hospital visits (including a six-month stay at Great Ormond Street), intensive physiotherapy, cannulas, medication, general anaesthetics, biopsies, MRIs, and more. But through it all, he has remained his happy, bright self. He brings joy to everyone he meets, and for a time, the hospital became both his home and playground.
"Having my child's life in the hands of doctors, nurses, and research teams left me humbled, overwhelmed, eternally grateful… and, at times, feeling utterly powerless."
Diseases like Freddie's are rare, but millions of children and adults collectively face some form of rare disease. Without ongoing research, medical breakthroughs, and the incredible medical teams, children like Freddie wouldn't have a chance to live, play, and grow. Even as recently as five years ago, a case like Freddie's could have had a very different outcome.
It's terrifying to look back on what we faced in those early days, but rather than dwell on that, we want to focus on the gift we were given and do our best to ensure advancements continue in these areas. Illnesses like Freddie's can be gruelling and life-altering — from dealing with the symptoms to long-term effects, disability, and medication side effects. With autoimmune diseases on the rise, it's vital that we raise awareness and funds to support research and care.
Every donation will go towards helping children like Freddie via Leeds Children's Hospital and Great Ormond Street.
