As Dravet Remembrance Day approaches on June 15th, we’d like to share a heartfelt blog post written by Blake Fish about her son, Bentley.
Bentley was the kind of child who could change the entire atmosphere of a room just by walking into it. He had a spark about him; an undeniable charm, a brightness in his eyes, and a spirit that radiated joy. From the very beginning, he was full of life. Curious, funny, stubborn in the best way, and full of love. He was the center of our world, and every day with him felt like a gift.
Bentley was only one year old when he was diagnosed with Dravet syndrome. Before we had a name for it, we noticed something wasn’t quite right. His seizures began with fevers or any time he got sick—events that, for most children, would just mean a few days of rest. But for Bentley, those moments triggered terrifying episodes that changed everything for us. The seizures were long and unpredictable. At first, we were overwhelmed, terrified, confused, and searching for answers.
The diagnosis of Dravet syndrome felt like a thunderstorm that wouldn’t pass. We were told things that no parent should have to hear. That his condition was rare, lifelong, and often resistant to treatment. That it would affect nearly every aspect of our lives. That we would need to be on guard at all times. And they were right. It was hard. It was exhausting. It was heartbreaking. But we also learned something else: Bentley was a fighter. And so were we.
The early months were filled with hospital visits, emergency medications, and learning a language we never thought we’d need to speak—neurology, seizure thresholds, rescue plans, sodium channel blockers, status epilepticus, intractable epilepsy. We had to rearrange our lives to protect him, advocate for him, and give him every chance to thrive. But as time passed and we learned more about Dravet syndrome, we found a rhythm. It didn’t make it easy—but it made it possible. We connected with other families. We found support. We clung to hope. And we made it our mission not just to keep Bentley safe, but to give him a beautiful life.
And he lived beautifully.
Even with everything he went through, Bentley’s life was full of love, laughter, and adventure. He danced to his favorite songs, splashed in the ocean, and ran down Main Street at Disney World with joy in his eyes. He adored animals, cuddled his favorite stuffed toys, and found magic in the simple things—like bubbles, books, and being outside. He was playful and fearless. Strong and sweet. He had a belly laugh that could melt away the hardest day.
One of the most precious seasons of his life was the eight months he spent seizure-free. Those months were nothing short of a miracle for us. We didn’t take a single day for granted. Every moment felt lighter, freer, like the world opened up just a little more for him. We traveled. We played. We watched him grow in ways we had dreamed of. For that window of time, it felt like Dravet had loosened its grip—and in that space, we got to experience Bentley just as he was: wild, happy, whole.
And then, just as suddenly as our new way of life appeared, he was gone.
Bentley passed away on January 11, 2025. There are no words to fully describe the heartbreak of losing a child. It tears through you. It leaves a silence where laughter used to be and a pain that never really fades. But even in the midst of that grief, we hold tight to what Bentley gave us in his almost three years on this earth. He gave us a deeper kind of love. A stronger sense of purpose. And an unshakable belief in the power of a little boy’s light to touch the world.
Bentley’s impact was enormous—not just on our family, but on everyone who knew him and many who didn’t. His story, his strength, and his smile reached people far beyond our hometown. We’ve heard from strangers who say they think of him when they hug their kids a little tighter. We’ve seen friends and family become more aware, more involved, more compassionate. He changed people. He made them better. And he continues to do so.
That’s why we share his story. Not just because we miss him—though we do, desperately—but because his life matters. Because children with Dravet syndrome deserve to be seen, supported, and celebrated. Because families facing a new diagnosis deserve to know that, even though it’s scary, there is still joy. There is still beauty. And yes, there is still life.
To any parent just beginning this journey, please hear this: live. Don’t let the diagnosis take away your moments. Go on the trip. Make the memories. Go to the zoo. Take the photos. Watch the sunsets. Celebrate the little wins. We did everything we could to give Bentley the fullest life possible—and we will never regret a single second of it.
Dravet syndrome is cruel, but it does not get to define your child. Bentley was not just his seizures or his diagnosis. He was a storyteller, a mischief-maker, a light-bringer. He was Bentley. And he lived boldly.
Today, we carry his legacy in our hearts and in our actions. We continue to speak his name, share his smile, and raise awareness in his honor. We support the Dravet Syndrome Foundation because we believe in the power of research, advocacy, and community to change lives. Bentley’s life may have been short, but his story is far from over.
We are forever proud to be his parents. And we are forever committed to making sure his light never goes out.
Forever Bentley 💜
