All In for Epilepsy Advocacy

When our 7-year-old daughter began wandering around our living room in a daze one New Year’s Eve, we thought she was sleepwalking. Minutes later, she had a convulsive seizure, and our journey with epilepsy began. We had no family history, she was not sick, and she never had a head injury. At the emergency room that night, the doctor suspected either a brain tumor, a migraine, or temporal lobe epilepsy. We were in shock and so confused as to how to navigate this new path.

It took us over a year and a half, many doctor appointments, EEGs, MRIs, and seizures to arrive at a diagnosis, which was devastating. She developed three different types of seizures, and we tried and failed on three different medications before trying the Ketogenic Diet and a fourth medication, until she finally became seizure-free for a while, at least. But as anyone with epilepsy knows, life is unpredictable when you have this diagnosis.

Navigating how to raise a young child with epilepsy, and her older brother, while juggling a busy family life, work, and school, was the challenge and privilege of my lifetime. Would I be the mom who sheltered her sick child in the safety of my perpetual vigilance? Or would I be the kind who marched forward into the world unafraid, and battled to make it a safer place for her to pursue a normal kind of life?  I chose to battle so that my daughter could pursue her passion for dance and school, and all the rest that life would offer her. 

The turning point for us as a family came when we attended our first support group meeting with the Epilepsy Foundation of San Diego. We were welcomed with open arms, compassion, and wisdom, and learned how to advocate for her safety and education. We became outspoken advocates for seizure first aid in her school district and raised funds and awareness throughout San Diego County so that anyone struggling with epilepsy would not feel alone. Speaking out made all the difference in my daughter’s life and in mine. I am happy to report that my daughter was able to dance with professional ballet companies and graduated from college. 

Unfortunately, despite training all her professors while in college in seizure first aid, none came to her aid when she had a seizure while in class one day. Luckily, her roommate was there to administer seizure first aid. This horrific event became another turning point for us. Realizing there is still much work to be done to fight against stigma, I became an Advocacy Champion with the Epilepsy Foundation to work with our government leaders to enact policies that will protect and support the nearly 3.4 million people in the U.S. with epilepsy. 

There is still so much work to be done for those of us managing this complex medical condition. As a mother and caregiver to my daughter and as an advocate to all, I am ALL IN when it comes to raising my voice for epilepsy advocacy!