Our Storys

 Toney's Story

In 1970, I was a student at DCCC studying Police Technology, preparing for the career I’d always wanted—to become a State Policeman. Then, in November, everything changed.

For a month I’d battled crushing headaches. My memory slipped in ways that terrified me. I’d forget where I parked, wander campus unable to find my classroom, and lose my train of thought mid-sentence. I knew something was wrong. I just didn’t know what.

An Arterial Vascular Malformation (AVM) deep inside my brain ruptured. I was rushed to Wake Forest Baptist Hospital, where surgeons fought to save my life. It was so dire the surgeon called a chaplain to prepare me to meet the Lord. My brain surgery lasted more than 13 hours.

Three weeks later, I opened my eyes from a coma—unable to talk, unable to walk, and unable to move the entire left side of my body. After a long hospitalization, the doctors told my family I should go to a rest home to live out the remainder of my life.

My step-dad—my dad in every way that matters—refused. “Giving up is not an option,” he said. He brought me home and decided to fight for me when I couldn’t fight for myself.

Then the seizures started.

For a year, my dad worked with me every single day. He exercised my left arm and leg until they remembered how to move. He helped me relearn to feed myself. He coached me until words came back. It took almost a year before I could speak again, but he never stopped believing.

Eventually, I returned to work—on heavy seizure medications and unable to drive. I met the woman who would become my wife, and we married the next year. I warned her my seizures could return at any time. Her family wasn’t happy, but she stood by me.

The seizures did return, and my medications grew more toxic. I worked nearly ten years at the Duracell Battery plant on Highway 64 East in Lexington. Near my tenth year, I had a grand mal seizure in the lunchroom—in front of 200 women. I woke up in the nurse’s office. Then I was fired.

That afternoon I walked out with no job, no insurance, a wife and three sons to support, and no idea how we’d survive. The stress made my seizures worse. Four weeks later, the State of North Carolina took my driver’s license.

Terrified of losing our home, I cashed in my life insurance to keep up the payments. With no insurance, I enrolled in research studies at Bowman Gray and took experimental epilepsy medications. Professor J. Kiffin Penry urged me to seek help from the Epilepsy Foundation. They told me to go to my church. My church—where I’d been a member for five years—told my family and me to leave and not come back. The pastor said epilepsy was “demon possession” and my “demons” could jump into him.

For five long years, I sat at home and no one reached out. My wife, Betty, went to work to keep our family together. Eventually her insurance helped cover my medications, but the seizures kept getting worse.

After years in research, my doctor finally told me not to make another appointment. No medication could stop my 3,000 seizures a month. He told me to prepare for the end of my life.

Betty and I broke down on the way home. We prayed for God to open a door—any door.

A few weeks later, Dr. Penry called. A company in Houston had developed a research device—a pacemaker for the brain—and they were ready to try it in a human. I was scared, but I had nothing left to lose. I prayed it might give me even a little more time.

I entered the study and became the first person to receive the device. For a year, the team learned from my case, hoping it would help others.

And during that time, I began to get my life back.

Jessy had his first seizure at just four months old. Doctors said it was caused by a fever and sent us home with no medication and no mention of epilepsy. Around his first birthday, he had another seizure, then another in the hospital two days later. We were told epilepsy was possible, but again left without answers or treatment.

As Jessy grew, his seizures became more frequent. A specialist, Dr. Hickling, performed an EEG, during which Jessy had fifteen seizures. He was finally diagnosed with epilepsy and started on medication. It was terrifying—our family was navigating a condition we barely understood.

School brought new challenges. Jessy wore a helmet for safety, endured bullying, and suffered a concussion when another student slammed him into a wall. In his last year of elementary school, a School Resource Officer mishandled him, leaving bruises. Because Jessy is autistic, the trauma was even deeper. We moved him to a private school to give him a safer environment.

Middle school was marked by worsening seizures, new seizure types, and frequent ambulance rides—sometimes two or three times a week. One severe seizure required emergency medication, oxygen, and a rushed hospital trip.

By high school, Jessy’s seizures finally slowed. He thrived in ROTC, played sports, and worked hard to wean off his medications. He dreamed of military service, but the DMV denied him a driver’s license, and MEPS disqualified him due to his medical history. Still, he graduated with AB Honors and pursued Criminal Justice in community college, earning a 4.0 GPA. But without a driver’s license, he couldn’t complete required ride‑alongs or work‑study.

After years of paperwork and evaluations, Jessy finally received his driver’s license at age 22—granting him independence and the chance to finish his degree. He began working at Dollar General and continued his long‑time role as a haunt actor, building confidence and community.

A turning point in our journey was finding the Epilepsy Association of North Carolina. Through them, we learned about seizure safety, advocacy, and support. Today, we attend monthly meetings, serve on the Board, and help other families. Jessy proudly serves as Junior Recruiter.

Jessy has now been seizure‑free for four years. But every parent who has witnessed a seizure knows the fear never fully fades. Epilepsy is unpredictable. A seizure can change—or take—a life in an instant.

That is why awareness matters. That is why education matters. That is why support matters.

And that is why we share Jessy’s story.