I never imagined I’d become the parent of a child with a rare disease. I never pictured a life built around emergency medications, seizures, feeding tubes, IEP meetings and hospital rooms instead of family fishing trips, soccer practices, and play dates. But when our son Mason was diagnosed with Dravet syndrome at just seven months old, our entire world shifted.
Mason had his first seizure when he was only four months old. It lasted 45 terrifying minutes. At 10 months, he had a seizure that lasted 90 minutes, was intubated, and nearly lost his life. Since then, our days have been filled with uncertainty, countless ER visits, and the constant fear of the next seizure. He lives with severe, prolonged seizures, developmental delays, feeding and mobility challenges, and has endured more in 7 years than most people face in a lifetime.
But Mason also lives with unmatched strength. He wakes up every day smiling and he fights through every challenge with courage and determination. We call him “Mighty Mason” for a reason. And we are so proud to be his parents.
Dravet syndrome is a catastrophic form of epilepsy that affects every aspect of a child’s development—and every fiber of a family’s existence. When you’re a parent facing something like Dravet syndrome, you quickly realize how few resources there are—how underfunded the research is, how limited the treatment options remain, and how desperately a cure is needed.
Mason saw all the top specialists, did the keto diet, and tried all the new, best medications- yet Dravet didn’t care and the seizures continued. We felt helpless. What next? What do we do once we’ve tried everything? So instead of letting that helplessness take hold, we decided to do something about it. That’s how Marlins for Mason was born.
My family along with a group of our friends launched Marlins for Mason in 2023, a nonprofit marlin release tournament and fundraising effort not just to raise money, but to raise awareness, build community, and give hope. Based in Ocean City, Maryland, our family and friends turned our heartbreak into purpose, and our fishing community rose to the occasion. In just two years, Marlins for Mason has raised over $818,000 for the Dravet Syndrome Foundation (DSF)—funding two major research projects, including a groundbreaking gene therapy project at the Allen Institute.
In 2024 alone, Marlins for Mason donated $505,000—the largest single gift in DSF history. But this isn’t just about a tournament. It’s about the belief that we can change the future for children like Mason. It’s about advocacy and awareness. It’s about making sure no family fights this battle in silence. And it’s about never giving up—not on our children, and not on the hope for a cure.
Why a fishing tournament? Because fishing is in our family’s blood. Before the seizures and hospital stays, we imagined Mason growing up on the water with his dad, grandfather, and uncles. While those dreams have changed, the love hasn’t. Our family, friends and fishing community have wrapped us in support—celebrating the good days and standing beside us during the hardest ones. Mason’s life may look different than we planned, but every moment with him is a gift. We celebrate every good day and fight for a future with fewer seizures, more treatments, and—one day—a cure.
This journey has brought me full circle—from desperate parent to nonprofit founder to, now, a proud member of the Board of Directors for the Dravet Syndrome Foundation. I am honored to use my voice and my experience to push for progress, support other families, and help drive research forward.
We fish not just for sport, but for science. Not just for prizes, but for progress.
We do this because we believe in Mason. We believe in a cure. And we believe that when a community comes together with purpose, nothing is impossible.
