Spinning on the tips of her toes, Amanda Stevens finds a point of freedom. Moving on the balls of her feet, she finds joy, a place where the rhythm of dance silences seizures and a disease.
Like a stutterer whose voice turns perfect in song, Amanda goes epilepsy-free when moving to the beat of hip-hop and jazz. No eye flutters. No twitches. Not the slightest hint of an episode.
This isn’t what doctors predicted. When Amanda, 26, was in third grade, her parents were told epilepsy had caused an irreversible learning disorder. She would never reach fourth grade. They should forget about college. The petit mal seizures that began when she was 3-years-old did not convulse her body. But they caused Amanda’s eyes to roll back into her head, rendered her unable to see or hear for short periods and occurred up to 5,000 times a day.
“She was walking into walls and just standing there,” says Wendy Stevens, Amanda’s mother. “She would stray and have no clue where she was going.”
The wandering child grew into a driven adult with a compelling story. Amanda teaches second grade at the George Gervin Academy. She performs with the Silver Dancers. She owns two degrees from Florida State: a bachelor’s in Special Education and a master’s in Special Education with a specialization in Autism and Spectrum Disorders.
Doctors said she couldn’t learn. Amanda tells her students they can. “My kids at George Gervin all have their own issues,” she says. “Some have speech impediments or learning challenges or disorders that might not be diagnosed because their families don’t have the money to get that done. I want to show kids there is something they can accomplish when others say they won’t go far in life. It might take a little longer, but they will get there.”
Amanda suffers from a rare form of epilepsy, a neurological condition that affects nearly three million Americans. Most epileptics experience one of two kinds of seizures: primary or partial. Amanda has endured both for more than 20 years. Born and raised in South Florida, she spent so much time at Miami Children’s Hospital she called it a second home.
An older brother, Kyle, suffered grand mal seizures when he was young. He outgrew the episodes and never convulsed again. Amanda was not as fortunate. Doctors gave her a number of anticonvulsive drugs. She responded negatively to each.
In desperation, her parents flew to Europe in search of drugs not allowed in the U.S. They found a doctor in London who provided a prescription. Unable to find a pharmacy that would fill it in England, they searched for one elsewhere.
“We got the prescription filled through an apothecary pharmacy in The Bahamas,” Wendy says. “They sent the prescription to an animal hospital where I work as a veterinarian technician. It wasn’t cheap. People must have thought we were crazy but you do what you have to do when somebody tells you your child can’t function.”
The medicine stopped working after six months. Amanda’s parents considered brain surgery until one physician strongly opposed it. Their search for a remedy led them to a special clinic at Johns Hopkins. In third grade, Amanda was hospitalized and virtually starved for three days. Then she was placed on a ketogenic diet, a strict consumption of high-fat, low-carbohydrate foods.
For two years, Amanda ate morsels for meals: a leaf of lettuce, half a grape, olive oil, whipping cream, each serving carefully measured and weighed. She could not cheat when friends snacked on cookies at school. She could not deviate when cake and ice cream were served at birthday parties. The diet took a physical and emotional toll.
It was supposed to continue a third year. But then Wendy caught Amanda hiding in a closet, eating a piece of halloween candy. “That’s when I knew,” Wendy says, “we couldn’t do it anymore.”
Amanda found release in dance. She competed in ballet, tap, jazz and hip-hop, and enjoyed support from friends at her studio. From the age of 2, Amanda danced at home, in the car, in aisles of stores. In competition, her self esteem seemed to soar with every leap. “Dance,” she says, “was the only place I could function perfectly.”
As Amanda grew on stage, her seizures became shorter and occurred far less frequently. They did not hinder her performances with the dance team at Florida State or with the Silver Dancers at the AT&T Center. “The ketogenic diet,” Wendy says, “changed her life.”
The diet ended prematurely but greatly improved Amanda’s quality of life. In middle school, she joined groups that reached out to those with disabilities. The experience inspired her to become a teacher. Years of being told what she couldn’t do motivated her to excel in school and prove her doctors wrong.
She visited Miami Children’s Hospital with a copy of her certificate from the National Junior Honor Society at Pioneer Middle School. She returned after making the National Honor Society at Cooper City High. Amanda visited again after receiving her acceptance letter to Florida State. “They have all my certificates,” she says.
The paper trail stretches across time, across milestones that mark a miracle. The child who wasn’t supposed to make it past third grade teaches second grade. The girl once marked as mentally disabled is able to entertain thousands, spinning, jumping, moving to a beat that trounces a long ago diagnosis.