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December 29, 2017
Virginia's Seizure Notebook
Human Interest, CURE News

BY KATE COOPER, VIRGINIA'S MOM

On August 14, 2004, my 17-month old daughter Virginia suffered her very first seizure. At first it was subtle: a barely perceptible twitch of the eyes. But it escalated quickly, and within 24 hours she was admitted to the ICU.

She’s had more than 13,000 seizures since that day.

For years I carried a notebook and jotted down the date and time of each and every seizure. Every nurse, every doctor, every concerned stranger asked the same questions: When was her last seizure? How often does she have them? How long do they last?

That notebook made me feel like I had answers. But here’s the problem: All of these questions assume that we’re dealing with seizures in a vacuum. And we now know that epilepsy is not a series of isolated incidents; it is a cumulative tragedy. With each and every seizure, Virginia suffers more brain damage.

Every page of that notebook represents compromised potential, lost opportunities, missed milestones. Every notation changes who Virginia is as a daughter, a sister, a student, an athlete and a friend.

I used to count individual seizures. But I finally realized that even one seizure is one too many. And I stopped counting.

Twenty years ago, Susan Axelrod stopped counting, too. She started CURE and has since helped raise more than $50 million for epilepsy research. But epilepsy research is still tragically underfunded. In fact, even though it affects 43% more people than Parkinson’s, Multiple Sclerosis, Muscular Dystrophy, and Cerebral Palsy combined, epilepsy receives 60% less funding than each of these diseases.

As the year comes to an end, please resolve to help us close this funding gap. Let’s stop counting seizures and start counting seizure-free days instead.

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