Wednesday, November 30, 2022

York H.S. student with epilepsy fights for changes in schools

17-year-old York High School student Jamie Van Cleave advocates for Seizure Safe School bill. (WYDaily/Courtesy of Christie Van Cleave)

YORKTOWN — It all started when Jamie Van Cleave was called a demon by an eighth grade classmate. 

Diagnosed with epilepsy when she was just seven years old, Jamie, now 17, has experienced frightening seizures since she was a first grader. 

“Jamie typically deals with nocturnal seizures,” Jamie’s mother, Christie Van Cleave, said. “So she has a bad day or two a couple days a month, around the same time. She can have seizures at night, and get up the next day and go about the [day].”

When her eighth grade classmate and former friend called her a demon possessed after learning about her seizures, Jamie realized this could also be happening to other people.  

“I have to say that was the lowest point. It’s a very, very lonely condition,” her mother said. “A lot of people hide their condition.”

But instead of hiding from it, Jamie became even more vocal. In the fall of 2018, she began giving speeches at fundraising events and advocating for more education about epilepsy.

An Epilepsy Warrior

Soon after, the Epilepsy Foundation of America asked her to be part of the Teens Speak Up! Program, in which teenagers from each state work toward positive change for the epilepsy community through raising awareness and working with elected officials on Capitol Hill. 

In D.C., the Epilepsy Foundation of America asked to interview and photograph Jamie for their End Epilepsy campaign, which Christie refers to as “the moment.” This interview would create a public record that Jamie was living with epilepsy.

“I was really scared because once you take her pictures out there in these publications, you can’t take it back,” Christie said. “And when she went out for the interview, they asked, ‘What would the end of epilepsy mean to you?’

“‘Freedom,’ she said without hesitating.”

Upon hearing Jamie’s answer, “I just wanted to cry,” Christie said. 

“There was no turning back after this moment,” Christie said. “Her decision to courageously put herself out there for the greater good was incredibly emotional for me, but I was so proud of her decision.” (WYDaily/Courtesy of Christie Van Cleave)

Not all seizures look the same. For example, if someone is choking in the grocery store, people know what to do, Christie explained. 

“Would someone notice if she was having a seizure? Would they know how to help her?” Christie said. “They retreat instead of assist.”

“I think this process has given her so much confidence, independence and really a bright future,” Christie added. “She’s a really smart girl, but the world limits some people with certain conditions.”  

Two Teens’ Journey for Seizure Safe Schools in Virginia

Jamie connected with Brie Gesick, another Virginia teen with epilepsy who, like Jamie, was separately working toward Seizure Safe Schools in Virginia. The 2019 initiative ensures that schools are equipped with the tools necessary to respond appropriately to students experiencing seizures, according to the Epilepsy Foundation website

After meeting, Jamie and Brie decided to join as a team to make a real change in schools. 

In January 2020, the two Virginia teens announced the Jamie and Brie Strong Act, Senate Bill 420, in the Virginia General Assembly. 

The bill requires biannual training for teachers, staff and students, allowing them to have a seizure action plan, Jamie said. 

Jamie conducts Seizure Safe Schools training in public schools. (WYDaily/Courtesy of Christie Van Cleave)

Championed By Senator Bill DeSteph, Senate Bill 420–––later refiled in the 2021 legislative session as SB 1322––– provides information on how nurses, teachers or students can act appropriately and quickly to help any students experiencing seizures, according to the Epilepsy Foundation site.  

Together, the two have met with legislators to successfully pass the bill, which awaits Gov. Ralph Northam’s signature. Last year, Northam designated March 26 as Epilepsy Heroes Day.

Once signed, the law will take effect July 1, 2022. 

A largely misunderstood neurological disorder, over 84,000 people in Virginia are living with epilepsy, according to the Jamie and Brie Strong Act Facebook page.

“There are so many people that we met,” Christie said. “Before she was called demon possessed, she didn’t know anyone with epilepsy.” 

Before the bill was passed, Jamie initiated training at York Elementary School, York Middle School and York High School.

A Normal Teenage Life 

Now a student at York High School, Jamie is a straight A student and enrolled in Advanced Placement (A.P.) classes. She competitively rides horses and plays guitar.  

“I’ve been riding horses since I was diagnosed,” Jamie said. “My parents didn’t want me to be held back from having a normal life.”

She rides her own horse who came all the way from Germany. The horse has the interesting name of Diana Du Has Z. In the ten years since her diagnosis, Jamie experienced only one seizure while riding a horse, Christie said. 

“We try and have some normalcy for her,” Christie said. “It’s really helped her cope with her condition. The horseback riding keeps her calm and reduces stress in her life.”

Jamie has been riding horses since she was diagnosed with epilepsy 10 years ago. (WYDaily/Courtesy of Christie Van Cleave)

A typical day for Jamie looks pretty routine for most teenagers, but there are a few differences.

“I just wake up and start classes, but in between classes, I have to leave to take medication at 9 a.m. Then I go back to classes, finish the classes, and then at night, take medication at 8:30 p.m. Then after that, spend half the night in my room, get up at 12:30 a.m., eat something, then sleep downstairs,” she said.

Since her seizures typically happen during the night, Jamie sleeps downstairs so her parents can keep an eye on her. 

“People can die from seizures. It’s not uncommon,” Christie said. “The risk of that is why we watch her through the night. So we have to be very vigilant about that.”

Jamie’s Next Journey

According to the website for the Epilepsy Foundation of America, 1 in 26 people will develop epilepsy in their lifetime, and 1 in 10 will experience a seizure. Senate Bill 420 will help not only those with epilepsy, but any person who can have a seizure due to a sudden illness. 

The Centers for Disease Control and Prevention estimates about 3.4 million people in the U.S. have epilepsy, with about 470,000 of them being children. 

“It makes me feel really good that other students don’t have to go through with what I went through,” Jamie said.

Jamie will soon start her third year with the Teens Speak Up! Program, and shared with WYDaily the next chapter in her epilepsy journey. 

“Back in October, I did some testing to possibly pursue surgery to get rid of epilepsy,” she said. “And they think I am possibly a surgery candidate.”

Jamie will soon undergo more testing to see if she is eligible for the neurological surgery. About 1 percent of people with uncontrolled seizures get referred for surgery, Christie said.

“She has about a 1 percent chance of seizure control,” Christie added. “But we’ve never given up because 1 is greater than 0, so that means to me there is a chance.”

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