When 19-year-old Sofie Levy was 5½, she had what her parents think was one of her first epileptic seizures. It happened in the early morning and though her frightened parents called the paramedics, by the time they arrived Sofie was just fine.
They visited the pediatrician the same day, beginning a four-year quest to figure out how to make the seizures stop. As the seizures escalated from simple “blanking out” episodes to more-dramatic instances where Sofie involuntarily stood up and extended her arms, multiple prescribed medications failed to help.
“It was horrific. It was frustrating,” says Sofie’s mom, Candy Levy, adding that the family didn’t have many opportunities to meet others dealing with epilepsy. “Back then, in 2006-2007, we didn’t have Facebook groups and we didn’t have social media platforms where you can reach out to people. That, today, makes a huge difference for people.”
Finally, when Sofie was 9, the family was connected with a neurosurgeon at UCLA who said he could help. Sofie had successful brain surgery in 2009 and has been seizure free for more than 10 years. “Sadly, there are people who are on this journey for 20 years, and for a lifetime, and they don’t ever get that end result,” Levy says.
To help more people connect with help, the family founded Sofie’s Journey, a nonprofit that, among other things, organizes the Epilepsy Awareness & Education Expo taking place Nov. 4-6 at the Disneyland Resort. The event launched in 2013 as a small event in the theme park. “We had 972 people in purple shirts, together at Disneyland because they either had epilepsy or had somebody that they loved with epilepsy,” Levy says. The next year, they added an education expo, and the event grew each year.
This year, the expo’s seventh, more than 5,000 people from around the world will attend.
The first two days of the free event take place in the Disneyland Hotel, where 120 exhibitors will set up to meet visitors. They include leading epilepsy professionals, more than 60 nonprofit support groups, epilepsy centers, manufacturers of drugs and other treatments, seizure dogs and trainers. There will be sessions where visitors can ask questions of doctors, as well as lectures from some leading practitioners in the field. Speakers will cover topics ranging from understanding EEGs to epilepsy surgery, newly diagnosed kids, neuroinflammation and autoimmune issues, ablation and hard-to-treat epilepsy. This is for all ages as Epilepsy doesn’t discriminate.
Attendees must register online at www.epilepsyawarenessday.org to attend the free expo.
The third day of the event takes place at the Disneyland Resort and participants must purchase tickets at the park or via the Epilepsy Awareness Day website to enter and receive their participation pack, which includes the purple event T-shirt.
To reach out to even those who can’t attend the expo, Sofie’s Journey is publishing “After That Day: Stories of Epilepsy,” profiling 45 people whose epilepsy experience changed their lives. More than two years in the making, the book begins with the Levy family’s story and includes portraits by photographer Karen Haberberg. The stories included have been written by parents, caregivers and people with epilepsy, who detail their experiences, both hopeful and horrifying. It covers everything from a young girl who was passed around among relatives because of her disorder to a service dog who can smell seizures to a pioneer in the field of CBD treatment.
The book will be available at the expo and on the website, but the main goal is to place a book in Epilepsy Centers (hospitals) and medical offices across the U.S. Along with this annual event, it’s one more way the Levy family wants to help people touched by epilepsy understand that though their journey might be difficult, they aren’t alone. “That’s our biggest accomplishment, is giving people hope,” Levy says, “that there’s somewhere to go.”