Fundraiser creates buzz for epilepsy awareness

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Updated: August 4, 2011 4:20PM

A steady stream of freshly shorn buzz cuts filed out of Fantastic Sam’s in Orland Park on Sunday.

The haircut was the cut of choice for the late Danny Stanton, a 4-year-old who died of a seizure in December 2009. And every haircut Sunday was a donation to the Danny Did Foundation, an organization named in Stanton’s honor with a goal of preventing deaths caused by seizure.

The event was hosted by Ryan and Owen Toppi, 8-year-olds from Orland Park. Their cousin Charlie was Danny’s best friend, and they’re on a mission to reduce the chances of others suffering the same fate as Danny.

“We want to raise awareness so this doesn’t happen to anyone else,” said Owen.

According to Michelle Toppi, Owen and Ryan’s mom, the day was an unqualified success. Not only had they raised money, but a young epileptic had come in for the event and they had the opportunity to inform the family of the risks of sudden unexplained death in epilepsy. It was a talk they’d never had with their doctor.

“If one person walks away with more awareness, then it was a success. And I think we did just that,” Michelle Toppi said.

The Danny Did Foundation is taking a two-pronged approach to stopping deaths by seizure. Their first goal is to raise awareness.

“Danny’s parents were never warned of seizures during sleep. We want to open communication channels between medical staffs and patients to alert them to the possibilities,” said Mary Duffy, a Danny Did Foundation official.

Duffy noted that 50,000 people die a year from seizures, more than breast cancer, yet the cause receives little notoriety.

The second initiative is to make use of technology to stem deaths via seizures during sleep. Much of their funding is directed toward clinical trials for the Emfit, a device that rests under a mattress and detects if the sleeper enters a seizure.

The device will need FDA approval before it can be distributed, and the Danny Did Foundation is actively pushing the trials through.

This year’s event was the second annual Buzz Cuts for Danny, with fundraisers held not only across the city, but across the country as well. Another was held at Do or Dye Hair Design in Chicago’s Norwood Park community, with two others held in California and Pennsylvania.

The 17-month-old foundation holds a number of events and fundraisers throughout the year, many organized around Danny’s favorite activities, including a basketball clinic and kickball tournament.

May 22 has been declared Danny Did Day for Epilepsy Awareness across the state.