Epilepsy survivor crusades for victims

By Rose Sgarlato
SPARTA- Four years ago, Tania Fonovic was getting ready for work and had a gran mal seizure. Soon after she was diagnosed with epilepsy at the age of 26. Four years later the public relations executive and Sparta resident has had two brain surgeries but is back to work in New York City managing a company and has 1600 followers on her Instagram page @seizurmoment.
Seiz-ur-moment is not an official non-profit, says Fonovic, but a place for the epilepsy community to go.
“During the four year time frame period, there was not a lot of help and education out there especially compared to other diseases. People don’t want to speak about epilepsy,” Fonovic said.
Instagram@seizurmoment began over two years ago and has followers from all over the world including people with epilepsy, their friends and families. Fonovic and others post facts and information about their personal situation and tell their stories.
“I shared information about what I was going through and photos of me post surgery,” she said. “ I have become friends with parents of patients. We are united as a group. We coach each other.”
And although neuropsychologists often treat Fonovic and fellow patients, Seiz-ur moment presents an alternative forum.
“I wanted a different network. This is more of an intimate resource of people telling stories and collaborating.”
Fonovic said that medical doctors do not weigh in and comment, but she does believe they follow her page. The global input allows followers to talk about the stigma of epilepsy in their country vs. the US.
All of this outreach and Internet appeal has led to an on-line fundraising campaign to help Bobby Plantz, a 12-year-old epileptic in O’Fallon, Illinois. Plantz’ mother Chris contacted Fonovic through a friend.
Since the age of two, Bobby has refractory epilepsy and is now resistant to medications and surgeries. His mother tells his story in detail at www.gofundme.com/bobbys-battlefighting-seizures. The Go Fund Me page was set-up by Chris in an effort to raise money for medical marijuana drops known as CBD.
According to her and the child’s doctor, this is the last resort for Bobby, who experiences constant seizures and pain. Plantz original goal was to raise $1,000 for the CBD. Then Fonovic stepped in.
“When I found out about it two weeks ago, they had only raised $125,” said Fonovic. “She wasn’t getting anything and then she connected with Seizurmoment, and we got traction.”
The revised goal is $3,000. As of July 18, $1,590 was reached in less than two weeks.
“It is a natural calling for me to help. Bobby is not a candidate for surgery and resistant to medications. The CBD oil which does not have TCH will slow down the brain activity and give him some relief,” said Fonovic. “And insurance does not cover it.”
Fonovic contacted the Sparta Independent and is hoping to gain support from the Sparta community about Bobby’s battle while also reversing the stigma of epilepsy.
“I really do it for the child. His mother has responded with such gratitude. In my heart, it pulls at me.”
As for Fonovic, she is feeling great and working in New York City managing a public relations company.
“I love being in the city. I don’t have a fear anymore.”
Those interested in helping Bobby, can search Bobby’s Battle at GoFundME.com; to contact or follow Tania Fonovic go to Instagram@Seizurmoment