George's Story
George is a 10-year-old boy whose bravery knows no bounds. George suffers with a condition called Chronic Recurrent Multifocal Osteomyelitis (CRMO), leading to painful lesions on his bones. It is a very rare autoimmune/autoinflammatory disease which affects around one in a million children.
At the age of three-years-old, George’s symptoms first appeared as a limp and his parents Leah and Declan brought him to A&E at Children’s Health Ireland, Crumlin. What followed was over two years of trips to almost every department in the hospital before a full-body MRI finally confirmed his diagnosis in 2021.
What started in his feet has since progressed to his legs and hands. He struggles with walking and undergoes multiple therapies throughout the year. George takes immunosuppressive medication in both tablet and injection form weekly, anti-inflammation medicines and sometimes requires stronger treatments during flare-ups. He also has regular exercises that physiotherapy give him to help with mobility and muscle strength and to support daily activities. Throughout the year, he undergoes multiple hospital visits for check-ups, imaging, and monitoring to track the progression of CRMO.
Despite everything, George has shown incredible bravery. He was asked to be part of a research team to help doctors learn more about CRMO. He knew it wouldn’t lead to a cure for him, but he wanted to do it anyway, knowing it could help other kids in the future. That’s just who he is—he has such a big heart and always thinks of others.
The most challenging part of George’s condition is the unpredictability. CRMO comes in waves—some days, he’s able to move around more easily, and other days, the pain is so intense that even walking is a struggle. It’s heartbreaking to see him frustrated when his body won’t do what he wants it to. That he can’t be the child he wants to be.
Leah, George’s Mum says ‘George’s consultants in rheumatology are Dr. Kileen and Dr. McDermott and his nurse specialists Karen and Derek, and they are all amazing. The physiotherapy and occupational therapy teams have played a huge role in helping him maintain mobility and manage pain. Their guidance has made a real difference in his day-to-day life. Last year George was part of the well-being program run by both departments and it was an eye opener for him to see that he’s not alone.’
The latest update on George’s condition is that his CRMO continues to be a challenge, but he and his parents are managing it as best they can. His pain and flare-ups still come and go, and while some days are better than others, he continues to struggle with mobility, especially in his legs and hands. While it’s not the childhood they imagined for George, he handles it all with incredible strength. He knows the hospital so well, and despite everything, he faces each visit with courage. It’s not always easy, but they all focus on the positives—the amazing care he receives, the support from his doctors and nurses, and the hope that every visit brings them closer to better managing his condition.
In order to give back, Leah and Declan hold an annual Halloween walk in Ballyowen Park to raise funds and awareness for Children’s Health Ireland and research programmes. Over the past three years, they have managed to raise over €11,000.
‘We are so grateful to so many people in Children’s Health Ireland at Crumlin. Beyond medical care, the support from hospital staff—whether it’s the friendly faces of the volunteers, receptionists or shop staff —has made a difficult journey a little easier. Their kindness and understanding have helped not only George, but also us as a family. This is our reality, and we take it one step at a time’