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Posted September 20, 2012 | comments Leave a comment

First Chelsea's Epilepsy Walk to be held Sunday

Event intended to raise awareness, funds for Sudden Unexpected Death in Epilepsy

By Kim Walter - kwalter@nvdaily.com

After less than six months of involvement with the Chelsea Hutchison Foundation, Stephen and Carol Shafran of Winchester are spearheading a walk to raise awareness and funds for Sudden Unexpected Death in Epilepsy.

When the Shafrans lived in Colorado, they were friends with the Hutchison family, which included Chelsea.

"When we lived there, we had no idea she had epilepsy," Stephen Shafran said Thursday. It wasn't until years later that the couple learned Chelsea had passed away as a result of SUDEP.

Shafran said that Chelsea's family was never educated or told about SUDEP, and didn't gain substantial knowledge of it until after she had passed away in the middle of the night at age 16.

"Chelsea was on all types of outstanding medications, she was taken care of, and the bottom line was, she wasn't 'at risk' of dying from epilepsy," he said. "That night, the family didn't know she was having a seizure and ... I'm sorry, I get emotional when I talk about this...they went to knock on her door and found she had died hours ago from a seizure."

The Hutchinson family decided to create a foundation "based on what she represented in their lives: a beautiful, outgoing young girl who had a bright future ahead of her."

"They want education, not once [SUDEP] occurs, but before ... we want to know more," Shafran said. "Families need to ask these questions and demand the answers."

The first Chelsea's Epilepsy Walk will be held Sunday at the Valley Health Wellness and Fitness Center in Winchester with opening activities starting at 8:30 a.m. and the walk beginning at 9 a.m.

Shafran said around 100 people have signed up for the walk so far, and as of Thursday morning, Target decided to join as a sponsor.

"People are waking up and asking, 'What is SUDEP?' 'Why is no one talking about it?'" he said.

While the main purpose of the event is to raise the awareness of SUDEP, the other purpose is to raise funds that will go toward grants to give families seizure response dogs and EMFIT response monitors.

Shafran said the monitors, which cost more than $750, go underneath a child's mattress so that if a seizure occurs, the motion will be detected and an alarm will sound to alert nearby caretakers.

"It might be too late, but it might not," he said.

The response dogs, according to Shafran, can cost any where from $5,000 to $20,000. Also, any breed of dog can be trained to not only bark when a seizure is happening, but also to retrieve medications and be in place to cushion a falling person.

"It's unbelievable how valuable and important these response systems are," he said. However, he added that the FDA has yet to approve either responses for production and distribution to all epileptic patients.

Several families will receive grants on Sunday for products. Barry Lee of WINC FM will make an appearance, and balloons will be released before the walk starts. Music will be provided by students of Shenandoah University, and participants will receive a purple T-shirt with Chelsea's slogan on it: "Live so that when you are gone it will have mattered."

Shafran said he was surprised when he learned how many families in the area had been affected by SUDEP, as it is not incredibly common.

"It doesn't occur as often as you think," he said. "And you don't want to be a worry-wart, but ... what do we have burglary alarms for? Smoke detectors? All these things we do just in case something does happen."

Shafran said the walk will be one of many events promoting SUDEP education and awareness in the community.

"Our chapter is small, and very, very new," he said. "But this is the beginning of something."

To register for the walk or make a donation, email Stephen Shafran at spshafran@gmail.com. For more information on SUDEP and the foundation, go to chelseahutchisonfoundation.org. Walk-in registration also will take place at 8 a.m. the morning of the event.

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