Overview

• Conor O’Rourke was diagnosed with a one-in-a-million vein of Galen malformation in March 2023 after a doctor noted his unusually large head during a routine check-up.
• Three endovascular embolisation attempts in 2023 failed when rare jugular vein blockages prevented catheter access to the malformation.
• In March 2025, surgeons at Alder Hey Children’s Hospital executed a world-first high-risk open-skull embolisation to directly target and block the abnormal vessels.
• Following the operation, Conor’s neurological decline reversed and his surgeon now considers him 99% cured with no further brain surgeries planned.
• He will undergo annual MRI scans, a potential angiogram in four to five years, and his mother, Lucy, is fundraising for his care by running the Manchester Marathon.