Tell us about yourself and the Dravet patient in your life:
Dominic is an inspiring 18-year-old who has faced incredible challenges with unwavering determination. Diagnosed with Dravet Syndrome at age five, he has battled this rare and severe form of epilepsy—characterized by frequent, difficult-to-control seizures and significant developmental delays. Despite these obstacles, Dominic has shown remarkable resilience. He is now approaching six years seizure-free and proudly graduated high school in May 2025.
We live just north of Denver, and as a family, we are incredibly proud of Dominic and the way he has embraced every challenge with strength and perseverance. He has never allowed his epilepsy to define or limit him; instead, he faces life with courage and a positive outlook. Rather than living in fear, he consistently chooses to live life to the fullest.
Over the past year, we’ve witnessed a remarkable transformation in him. Dominic has become a goal-oriented young adult, eager to take on new responsibilities and shape his future. This summer, he hopes to learn to drive—a milestone that reflects his growing independence—and he is excited about pursuing a meaningful career.
This fall, Dominic hopes to begin trade school to pursue his passion for welding. His journey has been one of perseverance, strength, and an unwavering commitment to moving forward. We believe his determination and optimism will continue to serve him well as he takes the next steps in his education and career.
When did the patient’s seizures begin?
Dominic’s journey with epilepsy began at 18 months old when he experienced his first seizure during a fever. About a year later, he had his first seizure without fever, prompting a long and difficult search for answers. He was officially diagnosed with Dravet Syndrome around age five, and shortly after, we began the ketogenic diet. While seizure control remained elusive for some time, Dominic adapted beautifully to the diet and remained in good health for over three years. After trying numerous treatments, we are grateful and proud to share that Dominic has now been seizure-free for nearly six years.
What is your hope for the future your loved one? For the Dravet community?
Our hope for the future is that the world begins to see the strength in our differences — that invisible challenges like rare diseases are met with understanding, not isolation. We believe that with more open conversations, classmates, teachers, coaches, and employers can become true allies. And that the resilience, empathy, and grit our family — and so many others — have gained through this journey will be recognized as powerful gifts, not shortcomings.
Our hope for Dominic is that he continues to approach life with the same fearlessness and tenacity that have carried him this far — and that those qualities are truly seen and appreciated. We believe he can accomplish anything he sets his mind to: a career in welding, a black belt in Tae Kwon Do, an independent life, and a loving family of his own to support and stand by him.
We may always be a little different, but we believe that difference is something to be celebrated, not hidden. We dream of a world where kids like Dominic don’t have to fight so hard just to be seen.
What advice do you have for newly diagnosed Dravet families?
To families newly diagnosed with Dravet Syndrome: you are not alone. This journey can feel overwhelming and isolating at first, but there is strength in connection. Build a community — not just of medical professionals, but of fellow caregivers, friends, and supporters who understand and walk this path with you. Encourage your child to find their own support network, too. Stay informed by connecting with research and current treatments, and don’t be afraid to advocate — for your child, for your family, and for others facing similar challenges. There is hope, there is progress, and there is a powerful community ready to lift you up.
