'Under-funded' epilepsy research has patient's mom collecting for a cure

By KRISTIN RUSSO, Valley Breeze Staff Writer
LINCOLN - LeeAnn Brigido's 19-year-old son Zach suffered his first epileptic seizure when he was six weeks old, and has endured a lifelong struggle with the neurological disease ever since.

Characterized by chronic seizures, epilepsy is a common neurological disorder marked by abnormal electrical activity in the brain. Brigido said that while the disease is common, it is often misunderstood and is drastically underfunded.

"The problem is that people who have epilepsy who respond to treatment feel a certain stigma and don't disclose that they have it. They don't advocate for themselves and so people with epilepsy don't have a voice. We don't have a superstar fighting for funding, like Parkinson's disease has Michael J. Fox. As a result, not as much research is being done as there could be," Brigido said.

Zach's struggle is compounded by the fact that he has not responded to the known treatments for epilepsy and his seizures continue to overwhelm him. "We have tried every possible treatment for him, but nothing has worked," Brigido said.

"He was diagnosed as a baby, but for a long time we didn't know how severe his case would be in terms of neurological development," Brigido explained. The constant seizures took their toll on Zach, his mother said. "Basically, he is at the level of a six-month-old in terms of development."

Despite his profound disabilities, Zach enjoys a rich life, attending Lincoln High School where he takes a full schedule of classes and programs, including language arts, music, art, and physical education. He even travels to a local pool for swimming lessons once a week and swims in his own pool at home during the summer.

"He loves being in the water," said his mother. "He's really relaxed in the pool." Zach's after-school nurse, Evelyn Rodriguez, said Zach enjoys going on walks and listening to music. Like a typical teenage boy, he prefers rock music with guitar solos. "If it's a song or a band he likes, he'll really rock out," Rodriguez said.

He also enjoys being with his younger brother and sister, 16-year-old Connor and 13-year-old Devon, and¬ has a special relationship with his dog, Lily.

"Lily can tell when he's not feeling well," said Rodriguez. "She'll climb up into his lap and stay near him. Some dogs are sensitive like that."

Zach has a tough time revealing his mischievous and spirited personality, Brigido said, because his constant seizures leave him exhausted. "He has several seizures a week. There are times when he has a grand mal seizure every day," said Brigido. "It just wipes him out."

Zach can walk with assistance, but requires a feeding tube. He has tried every available drug therapy for epilepsy, and even some lesser known treatments, including a vaso vagal nerve stimulator, acupuncture, and Reiki. Some therapies have helped, but none of brought complete relief, Brigido said.

"The drugs and treatments that are available only treat the symptoms, they're just band-aids. We need to know what causes epilepsy in order to cure it, and for that, we need more research," Brigido said.

Zach's parents -¬ his¬ father is Bryan Smith - chronicled their son's story recently in a short film produced by Brigido and Christian de Rezendes, a film director who runs the Slatersville-based Breaking Branches Pictures.

The film, "Zach: A Film about Epilepsy," has been launched on YouTube and premiered at a fund-raising event organized by Brigido in October to benefit Citizens United for Research in Epilepsy. Cork and Culture for CURE, a wine-tasting and fine art silent auction held Oct. 23, raised $36,000 for the organization.

Brigido has been involved with CURE since 1998 and currently sits on the organization's board of directors. She raises funds each year for CURE's annual drive because, "Ninety-eight percent of all donations are funneled directly toward research programs and grants."

The fund-raising campaign will continue until Nov. 25 at the three locations of Brigido's IGA supermarkets, in Pascoag, Slatersville and Scituate, where customers will be asked at the register to donate a dollar to the cause.

"We also have other businesses in the Slatersville area participating, including Gator's Pub, UPS, Mundy's, Mastery Martial Arts, and Pinelli's Cucina," said Brigido. "Our goal is to raise $15,000."

"People have already been generous with their donations, and for that I am truly grateful. It really means a lot to me, it is really overwhelming."

She added, "Our goal, our dream, is a cure."

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