I woke up in an emergency room surrounded by nurses, doctors, and tearful friends. I had no idea how I got there or how long I had been there. I had IV’s, oxygen, and monitors beeping all around me. I could barely make out the words that were being said. To who? To me? My last memory was being at the movies with some friends.
Things started to become clearer.
I was told I’d had a seizure the day before. Groggy and terrified, I asked why? The answer, they did not know.
Multiple blood draws, brain scans, and EEGs later, I was told I had a seizure disorder caused by head trauma from two years earlier.
My journey began there.
I was 21 years old and in college to become a nurse.
I was trialed on multiple medications until the correct one was found with the least amount of side effects. Through the support of my family and friends, I was able to find the strength to achieve management of this disease and complete my schooling and get my driver’s license back.
Twenty years later, I am a nurse and have seen many things to make me truly appreciative of how fortunate I am. And though I have heard many stories of strength and perseverance over the years, not many have touched me like CURE: My Story.
Upon reading, I was inspired by this mother’s story of her daughter, Savannah’s, battle with Lennox-Gastaut Syndrome (LGS)—a severe form of epilepsy that’s very difficult to treat.
The effects of this disease are devastating.
The story begins with a heart-wrenching story of a mother and father witnessing their two-year-old daughter have a grand-mal seizure. As you read on, you learn of Savannah’s relentless seizures, happening dozens of times each day. The medical intervention needed to keep her alive and the continual fear of losing a daughter drove this mother to do more.
As she watched Savannah struggle with the devastating physical and developmental impairments, as well as the side effects of multiple medications needed to help control the seizures, this strong mother began her fight.
She thrust herself into educating herself about epilepsy, eventually earning a PhD in Neurobiology. She has now dedicated her career to research and cure development, working with CURE: Citizens United for Research in Epilepsy. Ultimately, she hopes for a brighter future for those affected by epilepsy.
I cannot imagine being a child and trying to process what is happening to me.
I was fortunate to be old enough and in an environment where I could educate myself through my own research or colleagues regarding my seizures.
This mother’s story is an inspiration, and I feel the most heartfelt appreciation for all she and the others researching treatments do everyday.