While celebrating with friends and family last year on Christmas Eve, I received news that our daughter, Eden (10 year old Dravet warrior), would lose access to the medication that was her miracle. I remember the immediate panic attack like it was yesterday. What was this going to mean for our Dravet warrior who at the time was going on 7 years of great seizure control? We celebrated Christmas, brought in the New Year and charged forward trying not to let anxiety control us. There was no shortage of tears and long nights. We knew what this meant for her. We knew that she would lose the great seizure control and quality of life that she had.
Fast forward to August and the wean began. We had a solid plan with our neurologist and all that we could do is sit and wait. Six weeks later, she was completely off the medication and on a new one. Unfortunately, to say that our fears and concerns were correct is an understatement. We are now almost a full month off of that life-saving medication and the seizures have been out of control. She has experienced new seizure types as well as the old ones and she has also been experiencing behavioral side effects. She has had 2 hospital visits in the past couple of weeks which is a drastic change from not having visited a hospital in 7 years.
This turn of events for our family has completely reinvigorated our desire to do all that we can do to further the mission of Dravet Syndrome Foundation (DSF) – because we want a cure! Thanks to the fundraising efforts over the years, DSF has funded over $9.1 million in research giving us hope for Eden’s future. We know we have options for her now and that there are still more to come.
That is why my entire family has decided to participate in the 2024 Dash for Dravet Turkey Trot on Thanksgiving. We can’t imagine a better way to support our warrior than by raising money for DSF and to do it on a day that is specially designed for a time of reflection and thankfulness. It seems counter-intuitive to be thankful this year. I say that with all honesty. It’s hard right now to see the silver lining. But one thing is certain… the BEST chance on this earth for a cure and for a better quality of life for Eden is through the DSF. And so in the midst of anxiety and panic, I can remain thankful for the DSF and all of those who have paved the way for our kids.
The 2024 Dash for Dravet Turkey Trot is not just another Thanksgiving Day run—it’s an opportunity to make a real difference for families affected by Dravet syndrome while embracing the holiday spirit. Whether you’re gathering with family, friends, or even going solo, this virtual walk/run allows participants to join in from anywhere, making it accessible no matter where your Thanksgiving celebrations take you. Imagine lacing up your sneakers before the big feast, knowing that each step you take brings hope to children and families facing the challenges of this rare, life-altering form of epilepsy. I hope that you will consider joining my family this year and participate in the Dash for Dravet Turkey Trot. It’s so easy to set up a team, share it with others and begin raising funds. Let’s show our neighbors, colleagues and the world that we are dedicated to finding a cure for Dravet syndrome and that we are thankful for the work that is currently happening. From my family to yours, THANK YOU for joining us.
P.S. The first 300 registrants will receive this year’s Dash for Dravet t-shirt and fundraise $250 or more to earn Dravet Dollars that can be used for DSF swag in our online store! Plus, the top 12 individual fundraisers will also win a DSF customized 32 oz. Hydro Flask Wide Mouth with Flex Cap.Â