From Diagnosis to Defiance: A Life Without Limits

When my parents first learned I had severe hemophilia B, they were overwhelmed with questions and fears. One hematologist, some twenty years ago, flipping through an outdated textbook, told them I’d likely be in a wheelchair by the time I was fifteen. Thankfully, he was wrong.

Growing up, my parents did everything they could to protect me from injury, but they never stopped me from chasing my goals. One of my biggest dreams was becoming an Ocean Rescue lifeguard. When I told my doctor, she looked at me like I was crazy. The risks were obvious, but my parents believed in me. They pushed me to train hard and fight against the idea that hemophilia would dictate my life. Nearly eight summers later, lifeguarding remains one of the best decisions I’ve ever made. It gave me confidence, strength, and the ability to prove I could do anything.

That same mindset has carried me through every challenge in life, including college. I refuse to let hemophilia become an excuse or a limitation. I graduated with a marketing degree and am actively pursuing a career in the industry. Hemophilia shaped my resilience, but it has never defined my potential. Despite the obstacles, I have always believed in pushing forward and proving that this condition does not determine my future.

Then came my younger brother, Seán. We thought we were prepared for his diagnosis—until we learned he had an inhibitor. This changed everything. Routine treatments became unpredictable battles. A minor fall could turn into weeks in the ER. Seán endured years of different clinical trials, constant bleeding episodes, and months confined to crutches, canes, or even bedridden. But no matter how hard things got, he never gave in. His stubbornness became his greatest asset.

One of the biggest blessings in Seán’s life was his service dog, Oliver. From the moment Oliver entered his life, everything changed. Seán felt safe and calm and could finally receive treatments without distress. Oliver was more than a companion—he was a lifeline.

Seán has recently joined a clinical trial that has been life changing for him. He went from suffering spontaneous ankle bleeds just by walking on the beach to making Chaminade High School’s varsity crew team as a sophomore. Watching him row, knowing what he has overcome, is beyond inspiring—there isn’t a word strong enough to describe it.

Despite being brothers, our journeys have not been similar or easy, but it has shown us that hemophilia does not define us. As my mom always told us, you do not have to live with hemophilia, hemophilia has to live with you. Medical advancements, research, and perseverance make a difference. To every family navigating this condition: never stop pushing forward. Hope is real, and the future is brighter than ever.