Correction: The original story stated that this would be Jamie’s fourth year with Teens Speak Up! This will be her third and final year with the organization. The story has been corrected to reflect this. -Ed.
YORKTOWN — For the past ten and a half years, Jamie Van Cleave has gone through over 100 medication changes for her epilepsy.
Diagnosed with epilepsy when she was just seven years old, Jamie has since dealt with uncontrollable seizures that she has difficulty finding the words to describe.
This past year, she experienced as many as 50 seizures over the course of just one week.
“This kid was basically adjusting to medication kind of her whole life with epilepsy,” Jamie’s mother, Christie Van Cleave, said. “It was just kind of sad to think about. I mean, it told me how strong and tolerant she was through this whole process.”
Jamie, who suffers from drug-resistant epilepsy, really only had one choice left.
“He looked him in the eye and told him ‘I’m going to bring back your daughter, just minus the seizures,’” she said.
Jamie and her family were told that about 1 percent of people with uncontrolled seizures get referred for surgery. However, they were not giving up hope, with the mindset that one is still greater than zero.
“Every time we made that medication change we’d say ‘Okay, this could be the one.’ And like I said, we had over 100 changes, so that’s 100 disappointments,” Christie said. “So we’d always say to Jamie, ‘You know surgery could be an option for you. Don’t ever give up hope.”
In early June, Jamie underwent more testing at Boston Children’s Hospital, where a medical team drilled 16 holes into the side of her head and placed 158 electrodes in her brain.
Then, the medical team sent the electrical signals into two of the electrodes at a time, to test how it affected the body so they could determine which parts of the brain control what.
During that week of testing, the surgeon found that the area of her brain that was wreaking havoc for the past 10 years was due to dysplasia, which are abnormal development of cells within tissues.
After testing, Jamie was told life-changing news: she was a candidate for the brain surgery.
A Light at the End of the Tunnel
On June 16, Jamie underwent a final surgery in Boston to have the tissue removed.
“It was definitely scary and I was hesitant about it, but then I had to remind myself that if I want to get rid of seizures or have a chance to get rid of seizures, this is the only thing I can do,” she said.
Despite the intensity of the situation, Christie said that her family maintained a calmness throughout the process, feeling optimistic about what was to come.
Jamie’s last seizure was the morning before her surgery.
Since her surgery, Jamie has not had a single seizure.
“It’s Jamie without the seizures,” she said. “That’s it.”
Jamie said that she has only experienced three auras that occurred soon after surgery, which are symptoms that sometimes occur before a seizure, but doctors told her that this would be common in the first three months after surgery.
“We’re really hopeful, and I know that no one can tell us with 100% certainty that this will never come back,” Christie said. “But given what it was, the chances of it coming back are greatly reduced, and they said to us many times in the hospital that she has a really great chance of having permanent success with this surgery.”
“We’re just going to claim that and move forward as if that is the case, and I’m certain it will be,” she added.
A New Life
Jamie is now back at home. She will take about three months to fully recover from surgery.
“There’s a couple things that don’t feel so great, but that’s totally expected,” she said.
In late August, Jamie will return to school in-person for her senior year.
“It’s exciting just because it’s my senior year,” Jamie said. “I’m only going to be there one more year and all kinds of stuff happens for seniors.”
Christie is just looking forward to a first day of school without having to worry about seizures or recovery from seizures, a feeling that usually keeps them on the edge of their seats waiting for a phone call.
Jamie and her mother credit the York High School staff with being supportive and not wanting school to stand in the way of Jamie’s journey.
Senior year also means preparing for a new chapter of life.
Jamie has spent this summer talking to colleges and, if all goes well, she will move out of her house and have the college experience she has hoped for.
Before, navigating teenage life with epilepsy meant that some things were off the table for Jamie, like getting her license.
“You tell your kids when they’re little, ‘Dream big. Nothing’s going to stop you if you put your mind to it.’ Well sometimes epilepsy stops you,” Christie said. “And so when we got to the point not long before driving age and Jamie was talking about getting her license, I remember that awful discussion.”
But Christie said that for them, it was never “You have epilepsy, you can’t get your license,”
Instead they would say “When we solve this, you can get your license.”
This past spring, Jamie continued her advocacy work by starting her third and final year with Teens Speak Up!, a program in which teenagers from all over the country work toward positive change for the epilepsy community through raising awareness and working with elected officials on Capitol Hill.
“But I don’t plan to stop after this year,” Jamie said. “I want to continue doing it.”
Jamie also noted another takeaway from the surgery.
During testing, her surgeon was able to confirm that an anxious feeling that she has been unable to describe over the past few years was because of her epilepsy and not due to an anxiety disorder that she had previously been diagnosed with by doctors.
“I felt like it was very validating to her,” Christie said. “She went through these medications that were unnecessary.”
Jamie and her mom want other families going through the same challenge to know that there is still a chance.
“Jamie said to me one day about a year ago, ‘Mom, this cannot be my life.” And I said, ‘It’s not going to be your life,’ Christie said. “I just want other families dealing with this to just keep going. Don’t ever give up.”
After Jamie’s surgery, Christie recalls a very different conversation with her daughter.
“I’m so excited about my life, mom,” Jamie told Christie.
“Well I’m still nervous about my seizures coming back, but there’s a high probability that it won’t,” Jamie said. “And I’m excited to be able to go to college away from home, and not be as stressed out, and just have a job and be able to drive.”
Jamie said that while the surgery process was tough and stressful, she wants people to know that there is always going to be some kind of answer.
“I think the only difference I recognize in Jamie is that she smiles more,” Christie said.