Monday, September 25, 2023

Yorktown Teen with Epilepsy Champions Bill for Employee Safety

18-year-old Jamie Van Cleave wants with epilepsy or seizure disorders to feel safe in the workplace. (Courtesy of Christie Van Cleave)

YORKTOWN — A York High School senior is fighting so that people with epilepsy and seizure disorders will feel safe in their workplaces.

18-year-old Jamie Van Cleave has dealt with seizures for ten and a half years before she underwent brain surgery last year, which has since left her seizure-free.

Though her life has changed, she is still working towards creating a safer world for others like herself by advocating for more education about epilepsy.

In 2020, Jamie, along with her friend, Brie Gesick, another Virginia teen with epilepsy, announced the Jamie and Brie Strong Act for Seizure Safe Schools in the Virginia General Assembly. 

Championed By Senator Bill DeSteph, the bill requires biannual training for teachers and staff, while making sure that students have a seizure action plan.

Following the success of that bill, Jamie is now returning to the 2022 General Assembly with a new bill.

HB 1178 requires all Virginia employers to post seizure first aid information in a prominent spot inside the building so the employees see it on a regular basis and know how to respond and administer first aid to people who may need it.

“Like our argument was with the first bill, most people don’t know what to do and they don’t know what to think of the condition to begin with,” Jamie said. “But with people seeing the first aid steps every single day when they’re at work, then they’ll be able to respond better. Everybody who has epilepsy, or who has had a seizure before, will feel safer at work.”

Seizure first aid information is on a poster from the Epilepsy Foundation of America, which lists the steps to take when someone is having a seizure.

Jamie is working with Del. John Avoli, who co-sponsored the previous bill and is now sponsoring this new bill. Jamie said that Avoli did not hesitate when they asked him to carry HB 1178.

The bipartisan bill currently has nine delegates and one senator sponsoring it.

Jamie said that the bill could also help her one day.

“It also helps me in the future just in case I have something come back, because it’s always a possibility,” she said. “We don’t think it will happen, but just in case. Then I’ll be able to feel safe at work.”

There is also a distinct difference between this bill and the previous one.

While the first bill requires training, the HB 1178 just requires that the aforementioned poster located on the Epilepsy Foundation of America’s website be made available for free. It is available in 14 different languages.

“I think the interesting thing about epilepsy and seizure disorders is there’s a stigma that goes with that, and it’s hard for a lot of people to speak up,” Jamie’s mother, Christie Van Cleave, said. “A lot of people are very uncomfortable saying they have it. And by not saying that you have it, you’re putting yourself at risk. But there’s so much discrimination around this condition that its understandable why they wouldn’t.

The poster also notes actions not to take when someone is having a seizure, including “do not restrain” and “do not put objects in their mouth”; two widely common misconceptions.

“There’s two generations still living today that believe that you can swallow your tongue, which is attached to your body, so you’re not going to swallow it,” Christie said.

While Jamie remains busy with her advocacy work, her personal life has seen many changes since becoming seizure-free.

Jamie was accepted into her first choice for college, George Mason University. (Courtesy of Christie Van Cleave)

“I applied to colleges and I got into my first choice, George Mason University Honors College for Forensic Science,” Jamie said. “And since I’ve been at least six months seizure free, I can drive now when I take the driver’s test eventually.”

An avid horse rider, Jamie has also been cleared to ride her horse again.

After a busy senior year, which included involvement in school plays, Jamie will graduate from high school in June.

“I’m really excited for her,” Christie said. “And I think, like any parent should feel, you don’t want your children to go away. Our goal was to get her healthy so that she could become an adult and lead an independent life. So check, goal met,” she laughed.

Christie teared up as she reflected on her daughter’s journey to get to this point.

“On the other side of that coin, I’m really sad, because we’ve spent ten and a half years focused on really keeping her alive and healthy, and giving her as much opportunity as we could safely do to prepare her for this day, hoping it would come,” she added. “And I just really wish I had more time with her, healthy.”

Jamie also recently learned that she was selected as a candidate for the 2022 United States Presidential Scholars Program. Of 3.6 million graduating seniors, she is now part of a pool of 5,000 being considered at the national level for 161 selections.

As Jamie approaches the next chapter of her life, she continues to fight for the freedom and acceptance of all those dealing with seizures.

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