When your child is first diagnosed with Dravet syndrome, everything changes, instantly and profoundly. Life as you knew it shifts. Suddenly, your days are filled with unfamiliar medical jargon, emergency room visits, constant worry, and a deep, aching sense that no one truly understands what you’re going through. As a dad, that experience can be especially isolating.
Society often expects fathers to be the rock, the problem-solver, the protector, the provider. But behind that brave face, many dads are carrying a heavy emotional burden. You’re trying to stay strong for your child, your partner, your family, while inside, you’re searching for answers, connection, and a moment to simply breathe. You might feel like you’re the only dad in the world walking this road. But you’re not. There are other fathers just like you navigating the same maze of neurologists and specialists, fighting the same uphill battles with insurance, running on the same sleepless nights, and riding the same emotional rollercoaster that comes with watching your child struggle with seizures and the other health struggles that are a part of Dravet syndrome.
Dravet Syndrome Foundation (DSF), has built a strong, supportive community through our existing online groups. These spaces have been incredibly valuable, but over time, we’ve heard a recurring theme from the fathers in our community: “I wish there was a place just for us—where we can talk freely, with other dads who truly understand.” It’s not about replacing existing support. It’s about adding to it. About creating a safe, no-judgment zone for dads to be real with each other, without pressure, without expectations, and on a schedule that works for their lives. That’s why DSF is excited to launch our newest online support group – a private Facebook group created specifically for fathers in our patient community.
This group is a space to build real connection and community. It’s led by some of our incredible DSF Family Ambassadors – dads who have walked this path, and who understand both the weight and the worth of what you’re carrying. Whether you’re looking to vent, ask questions, share a win (no matter how small), or just scroll and read others’ stories, this group is here for you.
Sometimes you don’t need advice – you just need someone who gets it. If you’re a dad of a child diagnosed with Dravet syndrome, we invite you to join this private Facebook group today. You must be a member of the DSF Family Network to join the group
