Epilepsy is the heart of a theatrical play!

At age 3, Alicia Fournier was diagnosed with epilepsy. At age 6, she auditioned for, and won, her first role on stage.

Now 9, the Scarborough girl lives with daily seizures that rob her of huge blocks of time from her memory. She spends her school days at Wentworth Intermediate in classrooms close to the nurse’s office, and, because of the seizures, she struggles to keep up academically with her peers.
But epilepsy hasn’t slowed Alicia’s performing career. And, thanks to frequent visits to Children’s Hospital in Boston, she’s developed a concern for others that is far beyond her years.

On June 21, Alicia will take her first steps in her public anti-epilepsy battle, starring in a two-hour Broadway revue, “Alicia and Friends,” in South Portland, to raise money for the Epilepsy Foundation.

“I tell (my daughters), ‘You have a good life and therefore you should do what you can to help others,’” explained Alicia’s mother, Julie Fournier.

Alicia is more aware of that than most 9-year-olds because of her visits to Children’s Hospital, Fournier said.

“That’s when you realize how good you have it,” she said. “You see kids who aren’t going to go home.”

Alicia has participated in several other fundraisers in the past, but this is her family’s first effort focusing exclusively on epilepsy. And it’s a family affair – all of the performers, adults and children, are people who know and have worked with Alicia, including her uncle, Mark Barrasso, an actor and one of Alicia’s biggest admirers.

“For her to be at such a young age and to have the control and ability that she has is amazing,” Barrasso said in a recent interview. “She doesn’t use (epilepsy) as a crutch. If anything, she uses it as an inspiration. She inspires other people.”

He describes the performers in "Alicia and Friends" – six children and a number of adults – as “the upper echelon of talent in the Portland area.”

“I’m very excited about it. I’m getting to perform with a lot of peers and a lot of talented people young and old,” he said. “I am so happy to be doing it because it’s my niece, but I’m happy to be seeing the cause get some attention.”

One fundraiser won’t cure Alicia’s epilepsy, but she and her mother hope it could bring scientists closer to a cure.

Epilepsy has woven itself into the fabric of the Fournier family’s life since the day six years ago when Julie brought her seemingly normal 3-year-old daughter to Children’s Hospital to explore some puzzling behaviors: Alicia had begun “falling down all the time” and her parents had noticed her head bobbing and her eyes darting. Fournier expected to stay in Boston a day or so for some tests.

But as soon as she was hooked up to the monitors, Alicia went into a state of “almost constant seizure activity” that lasted 10 days. She began vomiting severely and when medication was introduced to bring her symptoms under control, she lost all motor skills.

“She was a giant infant,” her mother recalls. “It was devastating.”

A self-described problem-solver, Fournier and her husband Brian, a tugboat captain, had a healthy 11-year-old daughter Jacqueline – now a senior at Scarborough High School – and knew very little about epilepsy. Julie recalls having difficulty accepting the idea that doctors didn’t really know what caused Alicia’s seizures, or what her prognosis was.

After 10 days in Children’s Hospital, Alicia stopped seizing and regained her motor skills, and doctors were able to keep her epilepsy under control for about two years. When she was 5, the seizures started again. They’ve continued, on a daily basis, ever since.

“She has seizure ever single day,” Fournier says. “It’s just part of life for us.”

Alicia had had a seizure earlier in the day she was interviewed, landing her in the nurse’s office, but she seemed quite recovered as she danced, hummed, twirled and talked about her plans of becoming “an actress and a marine biologist.”

But few minutes later, with the nonchalance of a weather commentator, she announced, “Mom, I’m having a seizure.”

Like the majority of Alicia’s seizures, this one was barely perceptible, a far cry from the Grand Mal seizure many people envision when they think of epilepsy. During her seizures, Alicia loses track of time and sometimes of her surroundings. Her eyes may dart around, or she may seem to stare. At the end of the seizure, she may have a headache or lapse into sleep.

But the seizures are a constant challenge to Alicia because of the time she loses – time when other children are learning things, interacting with other people, growing. Even if the seizure activity lasts only a few minutes, it can be intensely disorienting. After a seizure, Alicia and her mother will trace back the events leading up to the seizure until Alicia remembers where she “left off.”

“Sometimes we have to go back pretty far,” Fournier says. “She misses all these chunks of the day.”

Her peers have teased Alicia on occasion – though not since Julie and Alicia explained epilepsy to them – but the biggest challenge for Alicia is keeping up academically when large chunks of her days are missing.

“She learns so much slower than all of her peers,” Fournier said. “The older she gets, the only place she doesn’t struggle is onstage.”

Actually, Alicia takes to the stage like a fish to water. Since playing Molly in "Annie" at age 6, she’s been in a handful of Portland-area plays, and she will play young Cosette this summer in the Maine State Music Theater's production of "Les Miserables."

She now takes weekly singing lessons, giving her a technique far beyond her years. And she’s growing ever-more the natural drama queen, packing wistfulness, passion, drama, jealousy and longing into even her living room rendition of Ariel’s “Part of Your World” from "The Little Mermaid."
And she claims she’s better on stage.

“I want everybody to come!” she said, grinning, her arms spread wide. "... (I want people to know) about epilepsy, and that it's okay to have seizures and to raise lots of money to help!"

If you go: "Alicia & Friends: A Musical Benefit for the Epilepsy Foundation"Saturday, June 21, at 7 p.m.The Portland Players420 Cottage RoadSouth PortlandTickets: $50 (includes champagne reception and raffle for items including Red Sox tickets, a Portland Sea Dogs luxury box, a spa package and Anthony's Dinner Theatre tickets).885-1307 or jfourni2@maine.rr.com

A CLOSER LOOK

The cast:Director: Michael DonovanChild performers: Alicia Fournier, Amanda Doughty, Rachel Friedman, Alina Grimshaw, Shannon and Colleen Howard.Adult performers: Mark and Anthony Barrasso, Fran Page, Thomas Smallwood, Brian McAloon, Jenn Miller, Becky Rinaldi, Kelsey Franklin,and Jamie Lupien.Music Director: Denise Calkins.

Based in Westbrook, Reporter Meggan Clark can be reached at 207-854-2577 or by e-mail at mclark@keepmecurrent.com.