From the time Vivien Knox was 2, her parents have been fighting for her — fighting for her to receive treatment for her epilepsy and fighting for her safety.
Now 14, Vivien and her parents are still fighting — now to educate others and help children avoid going through the same struggles she went through.
A disorder that causes life-threatening seizures, epilepsy is the fourth most common neurological disorder, with 1.2%, or around 3.4 million people, who reportedly had active epilepsy nationwide in 2015, according to the U.S. Centers for Disease Control and Prevention.
Living in fear of the ‘boogeyman’
Vivien’s seizures began when she was only 2, and they quickly began to consume the Knoxes’ lives.
“It was very debilitating … in pretty much every aspect of her life,” Vivien’s father Mike Knox said, adding that they spent the next six years in and out of the hospital, with many sleepless nights spent watching Vivien, as her seizures would typically happen at night. “You’re just living in a different kind of world than everybody else.”
While anti-epileptic medications are the first line of treatment for epilepsy, around one-third of people’s seizures continue, despite trying multiple types of drugs, according to National Institutes of Health research.
Vivien was one of those people whose medications did little to control the seizures, with those medications actually making Vivien “zombie” like, according to Knox, who added that they felt the epilepsy was robbing her of her childhood.
“She couldn’t understand humor, and that, to me, was kind of the saddest part about it (because) she just wasn’t laughing, she wasn’t being a little kid,” Knox added.
Vivien described the seizures as “the boogeyman,” always hunting her down when she least expected it.
“It was really difficult,” Vivien said. “Since nobody’s educated about it, the kids at my school would make fun of it.”
And it wasn’t just children who didn’t understand epilepsy, but also teachers and staff, as well.
While California has more children with epilepsy than any other state, with nearly 60,000 epileptic children, the state does not require law enforcement or educators to receive training in seizure first aid.
Looking at these statistics, it blew Knox’s mind that there weren’t more protocols in place, which made the Knoxes worried to even send Vivien to school, fearful that she wouldn’t receive adequate care if and when she had a seizure.
“Every year, over and over, we would go in (and talk to her teachers),” Knox said, adding that Vivien even had to switch schools after one refused to carry her anti-epileptic medication. “I just felt so lost and so helpless with their plan. … It was just very scary.”
At every turn, the Knoxes found themselves having to explain their daughter’s seizures, even to law enforcement, who on one occasion thought Vivien was drunk at the age of 5 while having a seizure, Knox recalled.
Finding ‘game-changing’ treatment
It wasn’t until Vivien was 8 that a doctor suggested Vagus Nerve Stimulation, or VNS therapy, a treatment that ultimately changed her life for the better.
VNS therapy uses a device implanted under the skin to prevent seizures before they start and stop them if they do, sending mild pulses through the vagus nerve to areas of the brain associated with seizures.
While there was some trial and error at first, Knox said he and his wife noticed a change in Vivien almost immediately after VNS.
“Usually in the morning, it was a huge ordeal and it would take over an hour to get ready (because) she needed assistance for a lot of things,” Knox said. “(After the VNS), she got up in the morning, she made herself breakfast, she put her clothes on.”
Vivien’s foggy memory often left her to relearn simple tasks, such as how to tie her shoes.
“All the things we kind of take for granted was what she was going through all the time,” Knox added.
Vivien has now been seizure-free for four and a half years, she said, adding that it’s been a night-and-day difference at school for her.
“If I learned something in school, I would forget it right away, like it would be a fog, but then (after the VNS) I was able to retain more information,” Vivien said.
Vivien’s grades also improved after VNS, along with her reading literacy, which nearly doubled from around the 50th percentile to 98, she said.
Now, Vivien can often be found making detailed sets by hand for the stop-motion videos she creates for her YouTube channel.
“I call the VNS her bodyguard — it’s always there watching her — it just took away all the fear for me,” Knox added. “It was a big game-changer. … It got us our lives back.”
Now to have Vivien go from being completely reliant on her parents to becoming independent, dreaming of one day being able to get her driver’s license and go off to college, is incredible for them, Knox added.
The fight to end the seizure stigma
Now that Vivien’s health has improved, the Knoxes feel compelled to share their family’s experience with others who may be struggling like they were to ensure their daughter was safe.
Knox began by writing a book, “Vivien’s Rain: My Daughter’s Battle with Epilepsy,” about Vivien’s journey, and hopes to work toward reducing the stigmas associated with the condition, and moreover, educating others on epilepsy.
“I was just finding out more and more over the years that there are so many people affected by this, but still so little education about it,” Knox said. “So to me, it’s simply (about) getting the word out.”
His recent efforts have been focused on passing Vivien’s Law, which aims to require teachers and law enforcement to receive training in seizure first aid — training that just involves a simple checklist, preparing them on how to handle someone having a seizure, such as keeping their airway clear, keeping them away from sharp objects and administering treatment.
“My goal is just very simple information that anybody can learn,” Knox said, adding that seven states already have similar laws in place for epilepsy, so all he wants is to do the same locally.
Knox initially received support on Vivien’s Law from local state representatives, and it took two years to write the legislation, only for things to fall apart when the legislators he was working with lost their reelection bids.
“Actually getting a bill up to the Assembly is pretty much like winning the lottery,” Knox said.
Even so, Knox is continuing his push to revive Vivien’s Law, while continuing to focus on training local law enforcement and educators on seizure first aid in the meantime.