Saturday, March 31, 2007

National walk for Epilepsy

At 9:15 a.m. tomorrow, while many of us are still enjoying our first cup of coffee, the Demetrovits family will be standing on the starting line in Washington, D.C., getting ready for the National Walk for Epilepsy.

The purpose of the walk is to highlight America's commitment to raising awareness about epilepsy, finding a cure and donating to the cause. All proceeds for the event will go to the Epilepsy Foundation.

According to its Web site, , the National Epilepsy Foundation is a national voluntary health organization, established in 1967, that "works to ensure that people with seizures are able to participate in all life experiences; to improve how people with epilepsy are perceived, accepted and valued in society; and to promote research for a cure."

"Right now, there is no cure but we will find a cure. The purpose [of the walk] is to bring epilepsy to the forefront and to bring in more research money. The main reason of the walk is to fund research to find a cure," said Fairfield resident Leila Demetrovits.

Demetrovits' 6-year-old daughter, Clare, has what she calls "a very rare brain disorder" known as subcortical band heterotopia epilepsy. Clare was diagnosed with epilepsy at the age of
The Demetrovits family created Clare's Team for the walk and all money donated to Clare's Team will go to the Epilepsy Foundation for awareness and research.

Demetrovits said by increasing public awareness about epilepsy it will help "fight the stigma, raise awareness and find a cure."

Although Clare has been suffering with this disorder for most of her life, Demetrovits said she's just like any other child. "We call it getting the shakies, but it's OK; she's been dealing with this since she was 2," Demetrovits said.

The only difference between Clare and one of her classmates is that the "learning process is much harder, she has to work twice as hard [in the classroom]," Demetrovits said. But that's not because Clare is an epileptic, it's because of the prescription medications. Clare, Demetrovits said, takes 12 anti-compulsive pills a day and on average suffers "partial seizures" four times a week. The medication that Clare takes causes severe drowsiness and short-term memory loss, according to Demetrovits and, most importantly, does not stop the seizures.

"No drug has ever stopped the seizures -- they have lessoned the severity of them -- but never stopped them," Demetrovits said, which is why more research needs to be done.

"The more understanding of how the brain works and more understanding of the neurological disorder, then the more hope there is," she said.

In Clare's Team site, which can be found on, the Demetrovits family states, "Participating in an event that raises money for people living with epilepsy touches all of our lives in some way. Our 6-year-old daughter fights this disorder and we believe there will be a cure in her lifetime. We need your support to find a cure."

As of press time yesterday, Clare's Team had received $3,015 in donations. Although the walk is tomorrow, the team will be accepting donations until they reach its goal of $10,000. For more information on the walk or to make a donation, log onto or call (866) 4EF-WALK or (866) 433-9255.


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