This March, I’m giving up my daily cup to support families like ours through the work of the Dravet Syndrome Foundation.
For families like ours, something as simple as a cup of coffee can feel like a luxury — because living with Dravet means being on edge and on alert 24/7, never knowing when the next seizure might come.
Our daughter Marianna was diagnosed with Dravet Syndrome after her first seizures began in infancy. Her seizures can be long, unpredictable, and life-threatening — sometimes lasting over an hour and requiring emergency care. At just 9 months old, she had to be intubated.
Her triggers can be things most people would never think twice about: a small change in body temperature, stepping from a warm bath into cooler air, shifts in weather, and most recently even teething.
Watching your child fight something you cannot see or stop is something no parent is ever prepared for. Families like ours live on constant alert — always watching, always listening, always ready to act — because seizures can happen at any time, day or night.
Dravet Syndrome is a rare and severe form of epilepsy that also carries the risk of Sudden Unexpected Death in Epilepsy (SUDEP). Families like ours live with that reality every day, which is why research and progress matter so much.
Children with Dravet are some of the strongest kids you will ever meet. Many face developmental challenges, frequent hospital visits, medications, and constant monitoring. But behind the diagnosis is still a child first — full of personality, smiles, and moments that remind us just how much hope there is worth fighting for.
And that’s exactly why this fundraiser matters.
Because the reality is that much of the progress in Dravet research only moves forward because families and communities choose to support it. When people show up, research moves faster. Treatments improve. And hope grows stronger for kids like Marianna.
For this virtual fundraiser, I’m giving up my coffee/tea — my daily “cup” — for 30 days in March and donating what I would normally spend.
If you’re able, I’d love for you to join us:
☕ Give up a cup for a day, week, or month
Donate what you would have spent
Share to help more people learn about Dravet
Even the cost of one cup can help push research forward and support families navigating this diagnosis.
Every small act of kindness brings us one step closer to better treatments — and one day, a cure.
Update: You crushed our goals — so we raised them. We started with a goal of $1,000… and hit it faster than we ever expected. So we raised it to $2,000 — and you did it again. We’re honestly blown away. The support for families like ours — and for kids like Marianna — means more than we can put into words.
Because of that momentum, we’re raising the goal one more time to $2,500. Not because we have to… but because you’ve shown us what’s possible. If you’ve already given — thank you. Truly. It means a lot to us. If you’ve been thinking about it, there’s still time to jump in (or even just share).
Let’s see how far we can take this together.
#PourItForwardForMarianna