Lily’s Fund advances seizure research, brings comfort to people with epilepsy
Whenever 11-year-old Meg Heinzen plays piano, she can anticipate the notes. Yet as a young child, her family could never have anticipated her habit of rolling her eyes at them could mean something more serious.
“I’m really not kidding when I say we would always talk about the fact she is always rolling her eyes at us, she’s going to be the tough one, and it wasn’t until her kindergarten teacher said something,” Meg’s mother, Tess O’Brien, said.
O’Brien noticed her daughter, the youngest of four, seemed to have a harder time in school compared to her siblings. Then one day she noticed something different about Meg’s constant eye rolling.
“She rolled her eyes, they kind of went in the back of her head almost, and then she looked back up at me, and I said, ‘What was that? Did something just happen?’ and she said, ‘I don’t know; sometimes that happens to me,'” O’Brien said.
After putting the struggles in school and the eye rolling together, Meg’s parents took her to see a doctor, who said Meg had a type of epilepsy.
Once O’Brien and her husband knew what the seizures looked like, they noticed Meg could have 20 to 30 seizures an hour.
“I’ll be in the middle of a conversation, all of sudden I’ll blank out, and I’ll come back and be like, ‘What are we talking about?'” Meg said about the seizures she remembers. Sometimes she doesn’t realize she’s had one.
As her diagnosis developed, her parents turned to Lily’s Fund, an organization focused on raising awareness and funds for epilepsy and epilepsy research at the University of Wisconsin-Madison.
Through Lily’s Fund, Dr. Rama Maganti, an epilepsy specialist, and Dr. Giulio Tononi, a psychiatrist, have teamed up to advance seizure research. The two have been studying a less-invasive way of locating seizures and how they travel, by using a high-density EEG, or HD-EEG, consisting of 256 electrodes to read brain activity in people with epilepsy.
If it is successful, they said it would be a breakthrough.
“This will mean several patients may not need to have additional surgery, and second it may tell the neurosurgeon what to cut and where to cut in a way that is currently not possible,” Tononi said.
In the meantime, the knowledge and comfort Lily’s Fund provides has led Meg and her family to be volunteers in the mission to help raise awareness for epilepsy.
“You feel helpless at first, you know. You don’t have a lot of control of it all, and being part of Lily’s Fund and Lily’s Luau makes you feel like you do have some control,” O’Brien said.