While fishing in a boat with his 13-year-old daughter, Hannah, Paul Meunier witnessed one of the thousands of seizures she has endured. Meunier gained a new perspective on what an epileptic's life is like.
"It's like living in a little boat on a big lake," the former Ham Lake mayor said recently. "The waves keep coming in. You're exposed to the elements. There's no escape."
To draw attention to epilepsy and the unpredictability, fear and havoc the disease brings to the lives of people who battle it daily, Meunier plans to live on a tiny 14-foot-long fishing boat for three days and nights, Aug. 3-6, on Forest Lake. Then on Aug. 9, Team Hannah's Bananas will participate in the Epilepsy Foundation's Stroll for Epilepsy at Como Park in St. Paul.
Hannah's Bananas, the legions who have supported Hannah's battle against epilepsy, have raised about $8,000 for research in each of the past three years, her father said. This year, the goal is to raise $25,000 and have 150 people stroll with the Meuniers.
"All Hannah wants to be is normal," her father said.
Her interests are the same as those of many 13-year-olds, said her mother, Lisa Meunier. Like any teenager on summer vacation, Hannah likes to stay up late and sleep in. She goes tubing. She rides her horse.
But she's been pulled from horse show competitions because of seizures. She also had a seizure in the middle of a lake, while tubing behind her family's boat.
Despite three major surgeries and medication to lessen the shock, the seizures have been as steady as they have been unpredictable.
"We can't deprive her of what she loves," Paul Meunier said. "We can't let epilepsy win.
"But we're always on edge."
One in 10 people will have a seizure at some point in life, according to MinCep Epilepsy Care of Minneapolis, which was the nation's first group of seizure experts, 48 years ago. But of those who experience that first seizure, only 2 or 3 percent will have more.
Born six weeks prematurely, Hannah began having health issues when she was nine months old. According to her Web page, it wasn't until May 18, 2005, that she experienced her first seizure.
In her most recent surgery, a device similar to a pacemaker was implanted in Hannah's chest, Lisa Meunier said. This Vagas nerve stimulator initiates mild pulses of energy to the brain. The device runs constantly, triggering shocks at steady intervals. The patient is unaware of these shocks, but they can prevent or reduce seizures.
"I find it amazing that Hannah looked forward to the surgery," her mother said. "She recognized it as an opportunity.
"You will never hear her complain about her health. That amazes us the most. She doesn't really think about seizures. Hannah just goes about her business with a smile on her face."
She loves country music, is a voracious reader and plays video games.
"She's such a positive kid," said Paul Meunier. "What epilepsy has done just breaks our hearts.
"Living on this tiny boat for three days will be an experience. But it's nothing compared to what Hannah goes through day to day."
Paul Levy • 612-673-4419