Shelbi Moncrief experienced her first seizure at age 7.
In the middle of the night, she was taken to Wolfson Children's Hospital in Jacksonville where she was eventually diagnosed with epilepsy. The years that followed included up to three seizures a week, which became more severe as she got older despite several brain surgeries.
Still, Moncrief achieved her goal of graduating with her high school class and walking the stage to receive her diploma. She has become an advocate for other people living with epilepsy.
"I try to stay positive," she said. "My motto is ‘with struggle comes strength.'"
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Now 24, Moncrief will be honored Saturday at the annual Jacksonville Walk the Talk for Epilepsy, which raises public awareness and funds for people living with the disorder. To begin at the Southbank Riverwalk, the event is sponsored by Nicklaus Children’s Hospital’s Brain Institute in Miami.
About 500,000 people and their families in Florida are impacted by epilepsy, a chronic neurological disease characterized by recurrent, unprovoked seizures, according to the 50-year-old Epilepsy Alliance Florida.
Moncrief will receive the alliance’s Clayton Feig Youth Award that recognizes youth battling seizures who work to remove the stigma associated with epilepsy.
Feig, an 18-year-old from South Florida, died in 1993 of complications from the disease. But he "demonstrated courage and strength of character" dealing with it when he was alive, according to the alliance.
'Living my life in a bubble'
Moncrief is doing the same.
"Shelbi’s work in raising local epilepsy awareness is remarkable," said Karen Basha Egoz, president and CEO of the alliance. "We’re grateful to her for serving as an advocate and raising awareness and are proud to recognize her as she is a true representation of all this award entails."
Moncrief, whose biological mother was addicted to drugs, was adopted at 18 months old. She had a normal childhood — until that first seizure.
"Growing up with epilepsy has put some major bruises and effects on my life," she said. "I've always been a social person and one to test the limits. Basically, if I could believe I could do it, I did do it. Having seizures stopped a lot of that because as I got older the seizures became more harsh and frequent.
"I struggled hard to get through school and I never failed a grade," she said. "I was falling out [seizing] in class around three days a week. There were even times that my mother would have to come and get me from school. She even went with me on some of the senior trips so that I could go."
At a child, Moncrief was in the care of a neurological physician at Wolfson. When she reached middle school, she was referred to a specialist at what is now Nicklaus Children's Hospital in Miami for further assessment and treatment.
She underwent brain surgeries in hopes of stopping the seizures. But they were unsuccessful.
"They really didn't help me that much," she said. "I still have seizures … that put me living my life in a bubble."
She cannot work, drive a car or go out with friends. Her mother, Juli Quarterman, has her own business so Moncrief goes with her. They put a mat down on the floor in case she has a seizure.
Her mother leads the "great support team I have that I call my family, who I know will love me through it all," Moncrief said.
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She supports the Walk the Talk because its primary mission is epilepsy awareness.
"I can help spread the word for epilepsy awareness for people that have it," she said. "I do that just as I would want someone else to spread that word for me."
firstname.lastname@example.org, (904) 359-4109
Jacksonville Walk the Talk for Epilepsy
The event is Saturday at 1301 Riverplace Blvd. on the Southbank Riverwalk on the lawn in front of Village Bread Cafe. On-site registration, vendor stations, kid zones and other activities begin at 8 a.m. and the walk at 9:15 a.m. To register, donate, volunteer or get more information, go to give.epilepsyfl.com/event/walk-the-talk-jacksonville/e332272 or email Mary Gomez at email@example.com.
For more information about epilepsy and services for patients and families in Florida, contact the Epilepsy Alliance Florida at (877) 553-7453, firstname.lastname@example.org or go to epilepsyalliancefl.com. The local office is at 5209 San Jose Blvd., Suite 102, Jacksonville 32207.
This article originally appeared on Florida Times-Union: 'Walk the Talk' in Jacksonville Saturday to boost epilepsy awareness