YORKTOWN, Va. - Red emergency lights flickering on the driveway became an all too familiar sight for the Van Cleave family.
Having upwards of eight seizures a night, sometimes a trip to the emergency room was the only option to help 17-year-old Jamie.
"Some of my seizures I couldn't breathe, some of them [I'm] unconscious for, some of them are convulsive," said Jamie Van Cleave.
When Jamie was seven, she was diagnosed with intractable, otherwise known as drug-resistant, epilepsy. Epilepsy is a neurological disorder that causes sudden seizures.
Over 10-and-a-half years, she was in and out of the hospital, clocking over 100 medication adjustments.
"Since medications weren't working for me, we ended up scheduling an appointment with Boston's Children's Hospital," Jamie said. BCH is listed as #1 by US News & World Report for top hospitals for epilepsy treatment, including surgery.
After countless tests and meetings with doctors, the Van Cleaves only saw one option: brain surgery.
"I mean, this is how big of a deal it is. People don't really understand," she said.
Jamie had to go through extensive screenings to see if she was even a candidate. In order to proceed towards surgery, all doctors involved must agree that the patient can move to the next stage. Doctor's told the Van Cleaves that statistically only 20% of candidates get through that gate.
"There were two surgeries though, the first one was to place different electrodes inside the side of my skull. Then towards the end of that week, before the official surgery, they sent electrical currents into my brain having me do different simple activities like moving my hands a certain way or producing a certain sound to make sure it was safe for me to have surgery in that area," she said.
Jamie's mother Christie said the first surgery to place the probes lasted 5.5 hours. Ultimately Jamie was approved and had the surgery on June 16, 2021.
Doctors said there was a 1 percent chance her seizures would be controlled. Five months later, Jamie was recovered and sitting down for an interview with News 3's Erin Miller.
"I feel like at this point I'm in a really good place. I haven't had a seizure since the morning of the surgery," she said with a large smile on her face.
And so her advocacy continues. Up to this point, she's helped pass the 'Seizure Safe Schools' bill in Virginia. The bill requires all school personnel to get seizure first aid training so they know what to do if a child has a seizure at school.
It was originally championed by Republican Senator Bill DeSteph, but has grown support within both parties.
Jamie has also met with legislators on Capitol Hill under the EFA’s Teens Speak Up program. This is her third and final year participating. She is an Ambassador for Teens Speak Up and also the EndEpilepsy campaign.
"My theme of advocacy has always been in the schools and bringing awareness to students and teachers," she said. "[At York High School] we hung up purple ribbons in the hallway and have little epilepsy facts on them so that when the students walk past them every day, maybe they'll hold onto that little bit of information."
Jamie is now performing in her school's play and applying for colleges. These are bucket list goals she never thought would be possible prior to surgery.
She said she's sharing her story to prove what's possible and break the stigma.
"The only reason people are scared about it is because they don't know what it is," she said. "People who have epilepsy are really misunderstood."
November is also National Epilepsy Awareness Month, which is another reason Jamie is sharing her story.
Jamie said, "If you're still having seizures, it helps even just the tiniest bit if you have something that brings you comfort."
There is currently no cure for epilepsy, which is why many advocates are pushing for more funding and awareness.
To learn more about epilepsy and how you can make a difference, click here.
