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8 | InTouch AUTUMN 2025 OUR FAMILY’S BATTLE WITH DUCHENNE MUSCULAR DYSTROPHY When our sons, Ethan and Ollie, were diagnosed with Duchenne muscular dystrophy (DMD), our world changed forever. What followed was a journey of resilience, medical trials, and unwavering hope in the face of uncertainty. FEATURE The only way I could cope with the diagnosis was by throwing myself into research. I learned that my sons had a deletion of an exon on the dystrophin gene. This also meant that they had a chance of benefiting from emerging exon-skipping treatments. There was hope. When our eldest son, Ethan, was born, he seemed like any other baby. He had all his fingers and toes, and while he was slower to reach his milestones, he always got there just before any concerns were raised. Life carried on as normal—until the arrival of his younger brother, Ollie. Ollie was born with a life-threatening breathing condition that required surgery at just four weeks old. During this stressful time, Ethan stayed with family, and they began to notice something unusual—they called it “laziness.” At the time, our focus was entirely on Ollie’s survival, but as he grew stronger, I couldn’t shake the feeling that something wasn’t right with Ethan. That nagging doubt led me to seek medical advice, and at the age of three, Ethan was diagnosed with Duchenne muscular dystrophy (DMD). Not long after, we received another devastating blow— Ollie was diagnosed with the same condition. DMD is a progressive muscle-wasting disease caused by a mutation in the dystrophin gene. It primarily affects boys, and over time, it leads to a loss of muscle function, making everyday activities increasingly difficult. My mother had three daughters, so we had no known family history of the condition. We had no idea that this genetic disorder was part of our family’s story—until it became part of our children’s reality. The only way I could cope with the diagnosis was by throwing myself into research. I learned that my sons had a deletion of an exon on the dystrophin gene—the most common type of mutation associated with DMD. This also meant that they had a chance of benefiting from emerging exon-skipping treatments, a promising area of research aimed at restoring dystrophin production. There was hope. The journey to treatment has been anything but smooth. After failing to get into one drug trial, we were finally A journey of hope Above: Ethan getting observations done in hospital. Ethan with his pug dog Pablo.