My two older sons were also diagnosed with the disease, and have since passed away from epilepsy complications, in what is known as “sudden unexpected death from epilepsy.”
My battle – and even more so my family’s battle – with epilepsy has changed me in ways I never would have imagined. I have become more assertive, even aggressive at times, in fighting for my sons’ needs, which are so often misunderstood by people outside the epilepsy patient and caregiver community. Today, I am a patient advocate, where I continue to fight for the 1 in 26 Americans who will receive an epilepsy diagnosis in their lifetimes. At this point, I would describe myself as a hopeful fighter, and I’m proud of who I am in this role.
As I look forward, I have two constant sources of hope. First, through my advocacy efforts, I have met many people in the research community and seen first-hand the amazing work being done to find new treatments, and possibly cures, for epilepsy patients. It is empowering to know there is an army of researchers every day looking for the next breakthrough discovery.
To these researchers, I want to say, “Don’t ever give up doing what you are doing, because we need you.” There is an entire patient population who would not be here – or whose lives would be severely diminished – without your work, and you are immensely appreciated. Time after time, when I took my son Daniel to the epileptologist, she always had one more solution, one more new trick to try. That wouldn’t be possible without the research community. We hardly ever see them, and we don’t know who they are. But because they are working, we have answers. And patients like my son Daniel have hope.
Additionally, I believe that discontinuing research or substantially reducing the time, money and effort put into R&D is simply unpardonable. I can unequivocally say that without innovative treatments, my son would not be alive.