As we edge closer to our second Steps Toward a Cure event benefiting the Dravet Syndrome Foundation, I feel led to tell Will’s story and how we got here – fighting for a cure through fundraising.
Will was born a healthy baby. He was right on track developmentally until one day, at 3 months old, he had his first seizure. Initially, we were told this most likely was a one-time event and even got released by neurology. Three weeks later, he had an obvious seizure and we were sent to a geneticist for genetic testing. This led to a diagnosis of Dravet syndrome at 6 months old. When the doctor came into the room to give us the news, he started with “I’m sorry”. It was then that I heard “Dravet syndrome” for the very first time. The conversation was a blur after that point, but words like “life-long”, “catastrophic”, and “fatal” stood out.
My husband and I cried the whole way home while Will cooed happily in the backseat. Our sweet, happy boy was handed a sentence that day and he was totally oblivious, just happy to be having a car ride. We started to research Dravet syndrome and realized how devastating the news truly was. While I sat with my grief and total shock, my husband began looking into cures that same day. There were a few trials starting in mice, but nothing actively enrolling in humans yet. We also realized just how new the diagnosis of Dravet is (1978!) and even newer the Dravet Syndrome Foundation (DSF), which was formed in 2009. I was in awe of the families who had taken this heartbreaking diagnosis and channeled that into aggressively fundraising toward research so that someday no baby will have to suffer with Dravet syndrome like Will has.
Will has been intubated 10 times due to seizures. Dravet syndrome is very resistant to any kind of medicinal intervention and getting seizures to stop can be incredibly difficult. He is developmentally around 18 months old and needs several therapies every week to work toward milestones he’s missed. He also has autism, a common comorbidity. He has some type of seizure activity every single day and needs constant care and can never live alone. All typical dreams for my sweet baby, Will, ended the day of his diagnosis and have been replaced with dreams for a day that Will can play outside with his siblings without having seizures, dreams of him finding his voice and hearing “mama”, and above all…dreams for a cure. It is this dream that led me to our Steps Toward a Cure events.
A cure cannot be found without funding. Dravet Syndrome Foundation (DSF) is parent-led and events just like Steps Toward a Cure are hosted by parents like me all over the United States. This is how the foundation gets a majority of their funding. When I began researching fundraising options for DSF, I looked into things like golf tournaments, food trucks, paintball, you name it. I started talking with Misty, our DSF Campaign Director, who reminded me of the Steps Toward a Cure program and how easy DSF makes it. All I needed to start was a location! I reached out to my old middle school teacher and friend, Cheri Henderson. Cheri is the Director of the City of Desloge Chamber of Commerce and she gave us permission to head the Labor Day 5K, a huge event for the city and a great opportunity for publicity and exposure. Once I had my venue, my mom (Carla) and I began reaching out to businesses for sponsorship. Misty and DSF made it so easy with ready-to-go forms, supplies, coordinating, etc. and I could not have made our Steps Toward a Cure event a success without their support and the support of the local businesses who came together for us. Our first Steps event was held in a torrential downpour, but the love our community has for Will and others like him brought them out in the rain anyway! It was so humbling to see how many people showed up for him and joined us in fighting for our dream of a world without Dravet.
I am so excited for our second Steps Toward a Cure: Desloge event coming up this Labor Day. I feel more comfortable this time around and hope to raise more than we did last year. The power to a cure is in all of us and it starts here through advocacy, fundraising, and hope.