Whether you’re new to the Dravet community or have walked this journey for years, chances are you’ve faced a season of stagnation. You know the feeling — when the things that once stirred your heart have become routine, almost background noise. Maybe it’s a new job that once filled you with excitement but now feels monotonous. Or perhaps it’s family drama that used to consume your energy, but now barely stirs a reaction.
For me, I have a confession — over the past few years, I’ve felt this same stagnation in my fight against my daughter Eden’s battle with Dravet syndrome.
From ages 4 to 9, Eden’s seizures were well-controlled. We had found that “magic mix” of medications that allowed her to thrive, and for the first time in years, our family could truly exhale. We lived, we laughed, and we dared to dream a little. But in 2024, everything changed. We lost access to one of the medications that had worked so well for her, and what followed was nothing short of devastating.
The seizures came roaring back — more frequent, more severe, and more unpredictable than ever. Add the hormonal changes of puberty, and it became a perfect storm. Eden now experiences multiple seizures every day, sometimes as many as ten. In the past year alone, she’s endured black eyes, chipped teeth, a broken arm, and countless hospital visits.
For our family — my husband, our two sons, and me — it’s been a heartbreaking return to constant vigilance and fear. Every noise, every silence, every pause in her breath keeps us on edge. And while our extended family loves Eden deeply, we’ve tried to protect them from witnessing the worst of it. We never wanted them to carry the same burden we do.
That changed one Saturday evening.
My husband and I were hosting a dinner party for a friend’s birthday, and my wonderful parents offered to babysit. About an hour into the evening, I got the call. My 7-year-old son’s trembling voice came through the phone: Eden was seizing, violently, and my parents were panicking. My husband immediately raced to their home, while I stayed behind with our guests, doing my best to hold it together.
Later, my parents shared their experience:
“Last weekend, we were watching our grandkids, one of whom is 11 years old with Dravet syndrome. Papa was outside playing with the boys while Eden and I were inside. We decided to go out to join them, but before I could even grab her iPad, I heard a thump. I ran outside calling for Eden and found her on the porch, seizing. I yelled for Papa, and he and the boys came running. It was gut-wrenching — to be reminded so vividly of what Eden and her parents endure every day. The seizing, the vomiting, the struggle with rescue meds… it’s something her parents face regularly, but we don’t. It opened our eyes to how fragile she really is — and how quickly everything can change.”
Needless to say, our family is no longer stagnant. The past year has been a harsh, heartbreaking reminder of the cruelty and intensity of Dravet syndrome — and yet, somehow, it has also reignited our fire.
So, what now?
We do what we can. I may not be a researcher or a scientist, but I am a mother — one who refuses to give up hope. And so, I fundraise. I know what you might be thinking: “Of course you do — that’s your job.” But I can say with complete honesty that even if it weren’t my job, I would still be doing this. Fundraising is one of the most tangible, impactful ways I can fight for Eden and for every child living with Dravet syndrome.
Right now, DSF’s virtual event, Dash for Dravet, is underway — and it’s one of the easiest ways to get involved. You can walk, run, or trot anywhere, anytime. Once registered, you can set up your own personal fundraising page and share your story with family and friends. It’s simple to share on social media, and the DSF fundraising team is here to help every step of the way.
And yes, there are fun incentives too:
- Raise $250 → Earn $25 in Dravet Dollars
- Raise $500 → Earn $50 in Dravet Dollars
- Raise $1,000 → Earn $100 in Dravet Dollars
Plus, the captains of the top 10 teams will receive an exclusive DSF Yeti water bottle — not available anywhere else!
So, I invite you — no, I challenge you — to reignite your passion. Don’t wait for things to change to and throw you into a new season to re-light the fire that our kids not only need but deserve. Let this be your moment to take action, help us fund the research that will change the future for kids like Eden.
Because while Dravet syndrome has tested our physical, emotional and mental strength and endurance, it will never extinguish our hope.
