Watching TV on a school day morning during her freshman year, junior Avra Liverman said she felt completely normal. Then she experienced her first seizure. “I woke up, and there were a bunch of heads in front of me, some ... who turned out to be the EMTs,” Avra said. “I was in shock. I didn’t know what was going on.”
Shortly after that day, Avra was diagnosed with epilepsy, a neurological disorder typically marked by sudden convulsions. Avra had her second seizure six months later, and from then on, she continued to experience about one seizure each month. Avra now takes 14 pills daily to manage her epilepsy.
Avra said that though she initially found her diagnosis difficult to accept, she has chosen to remain positive, using fundraisers for epilepsy research as an outlet for her energy.
According to Avra, her first reaction to the diagnosis was shock. “If you had told me in sixth grade that I would have epilepsy, I would have been like,‘What’s epilepsy? I’m not going to have anything. Nothing’s wrong with me,’” she said. “Then, all of a sudden, my whole life changed.”
Avra’s parents, Nancy and Irwin Liverman, said that their daughter has handled her diagnosis well. “Her willingness to be so vocal and expressive about [having epilepsy] has helped a lot of people,” Irwin said. “They start to understand [epilepsy] and not fear it.”
Junior Sammy Boucher, a friend of Avra’s, agreed that Avra has made the best of a difficult situation. “She has really kept her head up,” Boucher said. “It’s inspiring.”
Avra said she has made an effort to maintain a positive attitude. “I had the mindset of ‘I’m going to educate everyone, and hopefully people will be understanding,’” she said. “I also knew that I wanted to raise money to support this cause.”
Avra chose the Epilepsy Therapy Project as her cause and began holding dances to fundraise for it. The Epilepsy Therapy Project strives to accelerate the development of new therapies for treating epilepsy, according to its executive director Kim Macher.
The decision to host dances as a means of raising money was an obvious one, according to Avra. “My whole life, I’ve been dancing. It’s my passion,” Avra said. “So, [I thought], I love dancing, and people love parties, so let’s combine all of these things, and let’s make a fundraising dance.”
Boucher said that Avra’s dances are an enjoyable and effective way to raise money. “The dances are a huge undertaking, and she works so hard,” Boucher said. “What she is doing for the [Epilepsy Therapy Project] is phenomenal.”
Avra said that in addition to raising money, she hopes to spread awareness through her dances. “I had no idea whatepilepsy was [before my diagnosis]; I didn’t know what a seizure was,” Avra said.“That’s why, when I found out, I was so excited to let people know.”
Macher, like Avra, said that a lack of epilepsy awareness is common. “Knowing what to do when someone has a seizure is something everyone should know,” she said. “It is no different than knowing what to do when seeing a heart attack [or] choking, ... but first aid is not as commonly heard [of] for when someone is having a seizure.”
Avra’s family has rented both the Hyde Center in Newton Highlands and the Bishop Mackenzie Center in Newton Centre for dances, including Halloween and 1980s themed events. Overall, Avra and her family have raised more than $33,000 to support epilepsy treatments and therapies.
A ticket to each dance costs $18, a price some find too expensive. “People get upset over the price,” Avra said. “But … it’s not easy to live with this disorder, … and I’m not going to stop working until epilepsy is cured,” Avra said.
According to Avra, every dollar counts. “Even if I raise $100, that’s still $100 closer to curing epilepsy.”
Macher said that her organization has benefited greatly from Avra’s efforts.“We are so fortunate that we are working with her and that she chose us,” Macher said. “Not everybody … goes out and tackles [a] problem head on, and that’s why we think that [Avra] is fearless and determined. She’s a hero.”
Being fearless in the face of an epilepsy diagnosis can be difficult, according to Nancy. “A lot of people are in the closet about their [epilepsy] because there’s a stigma attached to it,” she said. “It’s all about being accepted. We need to accept everyone with whatever challenges they have.”
Although Avra strives to maintain a positive attitude, she said she sometimes feels discouraged. Because she has epilepsy, Avra cannot get her license and must frequently text message her mother when she is home alone. “I might look happy and giggly, but inside there is this girl who sometimes doesn’t know what to do,” Avra said. “[Epilepsy] impacts everything, and it’s always going to be there.”
Irwin said he was impressed by his daughter’s determination in the face of challenges. “Avra is not defined by her condition or her circumstances. I never remember her [asking], ‘Why me?,’ Irwin said. “She was just saying that she wanted to do something [to help].”
by Carly Meisel