Our Journey Living With Epilepsy

October 2023

By Marlo Fox

Epilepsy is the fourth most common neurological disorder in the world. For people with epilepsy, surges of electrical activity in the brain can cause recurring seizures; they can be visible and invisible. Epilepsy can impact individuals, families, and communities in a wide variety of ways.

In March 2017, my world changed forever. Ms. Wanda, my daughter’s preschool teacher at the Jewish Preschool on Sardis, pulled me aside at pickup. She expressed concern for my daughter. She had noticed involuntary movements and other clinical symptoms that had progressively worsened over a short period of time. At that moment, my heart sank and all I wanted to do was call my mother, who had passed away years prior. I wanted to curl up into a ball. Then my warrior instinct kicked in, and I was on a mission — relentless, focused, and determined never to stop until we had answers.

Four days later, my daughter and I found ourselves at Mount Sinai Hospital in New York City, one of the world’s renowned medical centers. It was there that my daughter received a diagnosis of generalized epilepsy, and the medical team promptly crafted a treatment plan. Since then, we’ve been on a challenging journey to Boston every six months for inpatient EEGs, neurology ap pointments, frequent blood tests, MRIs, and dealing with a range of difficult side effects stemming from this devastating disease.

This journey ignited an over whelming desire within me, a pull to support those enduring similar struggles. Last year my family and I volunteered at the inaugural “Walk to End Epilep sy” event in Charlotte. The par ticipants at this gathering were energized, passionate, and seek ing a sense of solace and commu nity, which the walk offered to all of us. The experience inspired me to do more. I couldn't remain passive any longer; I was ready to share our story and provide a voice for my daughter, our family, and all those who suffer as a result of epilepsy.

I reached out to the director of the Epilepsy Foundation in North Carolina and enthusiastically volunteered to take the lead in organizing the 2023 annual walk in Charlotte. I was excited when my employer, TIAA, embraced the role of of Premier Sponsor for the event. Epilepsy is indiscriminate in its impact; it affects many individuals within our own community. It's imperative that we come together and show our support for those battling this condition. By increasing our collective knowledge and understanding of epilepsy, we can channel more research funding towards finding a cure. The key to achieving this goal lies in open conversation and sharing our personal stories. We cannot fund research, raise awareness or combat the stigma surrounding epilepsy if we remain silent about it.

Join us in taking strides towards raising awareness and support for epilepsy on Oct. 15 at 9 a.m. at McAlpine Creek Park. Create a team, register, or donate at WalkToEndEpliepsy.org/NCCharlotte. Lace-up your shoes and join our walk to make a difference! Together, we can create a brighter future for those living with epilepsy.