Raising awareness for epilepsy


WEST MILTON – When a young man died suddenly in 2012, what he didn’t get to know, was how much his legacy would live on.

Now, the Third Annual Bigggnastyyy’s Poker Run & Hog Roast and Cornhole Tournament on Aug. 29, will honor him, spread awareness and help the Meyer family in Botkins launch “The Carabear Project.”

Grant Fryman had a seizure in late spring of 2012 and the doctors put him on medication. They assured him and his family that he was probably one of the people who has a seizure and never has another one.

“We walked out of there feeling pretty good. Like everything was going to be okay,” Grant’s mom, Darla Fryman said.

Four months later, Sept. 2, 2012, he had another seizure in his sleep and they found him in bed the next morning.

“We were totally lost and confused and didn’t know what was going on,” Darla said. A few days later she found something called Sudden Unexpected Death in Epilepsy (SUDEP) on the internet and read stories from other families that all sounded so much like how they lost Grant.

The neurologist that had taken care of Grant wouldn’t speak to them, Darla said. And the nurses didn’t have an answer to why they weren’t informed about SUDEP. “It made us more angry than anything else because anytime there is a risk for anything I feel like you should be aware of it. Even if it’s a slight risk.”

Doctors aren’t talking about it and they need to be, she said. It’s not super common, but it happens enough that it should be known about.

The first year they just had a small hog roast and corn hole tournament, just to remember Grant, he had a ton of friends and the small town of West Milton really rallied to support their family, Darla said.

“It was after that that I told my husband, that I really want to do something for epilepsy and really look into more things and find out how we can help in some way,” she said.

So she made her way down to the Epilepsy Foundation of Western Ohio in Dayton and was amazed when she walked through the door.

“There are all these pamphlets and all this information on SUDEP, which again, is something I had never even heard of,” Darla said.

Last year is when they first started doing the poker run and had 76 bikes.

“There was a little girl that we met through the epilepsy foundation, she’s 8 years old and has Dravet Syndrome which is pretty much terminal. It’s a kind of epilepsy that is really severe. They were trying to raise money to get her a seizure service dog. So I said, we want to help with that,” she said.

They donated the proceeds of the event so the little girl could get her service dog and gave the rest to putting up all new SUDEP information at the epilepsy foundation and spreading that information to all the local doctors offices and hospitals in Dayton.

This year, there was no little kid waiting on a service dog, so Darla thought they’d just donate the money to the foundation.

It’s the only one in the state of Ohio that provides people with their prescriptions when they can’t afford them and they are solely ran on donations. So that became important to me to help with that, she said.

But Cara Meyer’s story came about, when she was on Facebook one day and somebody had shared little Cara’s obituary. When she got to the bottom she read, “in lieu of flowers, donations can be made to the Epilepsy Foundation of Western Ohio.”

Eventually, the foundation connected the Meyer family and Darla and it went from there. Everything just fell together because the Meyer family owns Meyer’s Tavern in Botkins, a perfect stop for the poker run, Darla said.

“They (the family) really want to do something, really want to do research and get answers like we do. There is just so much about epilepsy that is not known,” she said.

Cara started having seizures when she was three. “She was on the same medication as Grant and it was hard on his body, so I can’t imagine what it did to this little girl, Darla said. She just caught a virus and her body couldn’t fight it off. Her family left the hospital in total shock, just like we did,” she said.

Carabears will be given to little kids in the hospital that have seizures, but they’ll also be for sale and all the proceeds from that will go to research.

Josh Meyer, Cara’s father, said they wanted to do something to get awareness out because not a lot of people know about epilepsy and they want to help the families in the future that have to go through what they went through.

“That’s what our goal is, our biggest goal is just raising awareness for epilepsy and SUDEP. It’s like the third biggest neurological disorder besides like alzheimer’s and the stroke and you see commercials and stuff on TV about it, and you don’t see anything about epilepsy,” Darla said.

“We call ours ‘Grant a Gift’ because his name was Grant and so the fundraiser each year will essentially be to Grant a Gift to SUDEP/the epilepsy foundation and another family out there. She said she can’t believe the amount of people who have thanked her since she’s started this.

“Because people don’t talk about it. It had such a stigma before, you know, something’s wrong with him, but any person, any race, or any age can have a seizure at any time,” Darla said.

She said, that’s what it’s all about, it’s just about raising awareness so we do it in memory of Grant. It all came together and it was just meant to be I guess.

“We also do a scholarship through Milton-Union in his name. So we had a fundraiser in January, we always do it around his birthday, Jan. 20, to raise money for his scholarship. We give out a $3,000 scholarship which is the biggest one given out at Milton-Union,” she said.

“We do the corn hole tournament because he was 23; he’d be 26 now. A lot of his friend’s don’t have bikes, so they like to do something. So they do that while we’re on the ride and then it all ends at the same place and we have the hog roast and raffles and all kinds of stuff,” she said.

The cornhole tournament starts at 3 p.m. with check-in and practice at 2 p.m. It’s $30 a team for corn-hole only and $40 a team with the hog roast. To register contact Trevor Luckingbill at 937-760-9905.

Darla said she has no idea how many people could show up at the event this year. She said there could be 100 bikes or possibly 200 bikes. And last year at the hog roast, they had 200 to 250 people, so it could be closer to 400 this year, they just don’t know.

Josh said their family is renting a bus and coming down to West Milton from Botkins because they don’t ride bikes. He said about 50 community members and friends are coming along too. He said they wouldn’t have been able to get through it all without them. He said they are great people and they have donated a lot of time to help their family.

The poker run will start at Skippers Tavern in West Milton with registration at 11 a.m. and they’ll leave at noon. It’s $20 single/$25 double and includes entry to the hog roast.

They will then travel to a bar on Ohio 47 in Sidney. They’ll go up to Meyer’s Tavern in Botkins, that’s when the bus will leave and then come back south and go to a bar in Newport. Then they’ll go to the Covington Amvets Post 66 in Covington and finally head back to Fayevores in West Milton, where the cornhole tournement and hog roast will be held.

They got the name “Bigggnatyyy’s” from Grant’s user name when he played video games. Darla said Grant was extremely good at video games and so he made that his screen name because that’s what all his friends called him.

She said, “It’s a great name because people aren’t going to forget that.”

They’ll start serving food at 5 p.m. $10 per person and 5-years-old and under gets in free with non alcoholic drinks included. They’ll be a cash bar and $1 draft beer.

They make T-shirts for the event and every rider in the poker run gets a purple bandana to wear. They also give out silicone bracelets to every person who attends any part of the events. They are purple and black and say Bigggnastyyy on one side and “Grant A Gift” on the other. Darla said they also have pamphlets and lots of information about epilepsy and SUDEP available to everyone.

The band Able Danger will be playing. The lead singer was really good friends with Grant.

Darla said she runs the fundraiser herself mostly, but her family helps her out a lot. Grant’s friends help out a lot, too. Darla said the epilepsy foundation donated some door prizes and a lot of the businesses in West Milton help.

“If you ask any of his friend’s he’d give them the shirt off his back or the last dime in his pocket, he was just that kind of person,” she said,”We want to carry on his legacy of being giving and raise awareness at the same time.”

For more information about the event visit the event’s Facebook page “BIGGGNASTYYY’S 2015 POKER RUN & HOG ROAST.”

For more information on epilepsy visit http://www.efwoflameofhope.org/.

Some of the riders from the 2014 Poker Run pose with Emalyne, the little girl they helped raise money to get a seizure service dog for.
http://aimmedianetwork.com/wp-content/uploads/sites/47/2015/08/web1_pokerrunphoto.jpgSome of the riders from the 2014 Poker Run pose with Emalyne, the little girl they helped raise money to get a seizure service dog for.
Fundraiser to help foundation, family in Botkins

By Alexandra Newman

[email protected]

Reach this writer at 937-538-4825; follow on Twitter @SDNAlexandraN

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