Big sisters don capes, help Albany preschooler explain epilepsy to classmates
Epilepsy is among most common neurological diseases, but research is underfunded
ALBANY — Ever since Nova Buyce was diagnosed with epilepsy at 17 months old, big sisters Ila and Willow have kept a watchful eye on their sibling.
Nova, who entered preschool at Albany's New Scotland Elementary School this fall, was joined by the first- and third-grade girls in her classroom on Friday. Ila and Willow donned superhero capes and read from a book they wrote and illustrated to explain their sister's epilepsy diagnosis to her classmates.
Titled "My Sister Nova," the colorful book is dedicated to "the little girl who laughed at her," referring to a playmate who misunderstand Nova's condition.
Proud mother Kristen Buyce said she hopes to spread awareness about epilepsy and raise money for research, which is sorely underfunded. Epilepsy is one of the most common neurological diseases, with around 50 million people diagnosed with the condition worldwide, according to the World Health Organization.
When the Buyces first noticed the "tics" in Nova when she slept, her age and the way the seizures manifested made it difficult to diagnose. It took a year and a half for doctors to identify the right combination of medication to stop the seizures, because the specifics of her condition were exceptionally rare, Kristen Buyce said.
"It was really scary, she was having up to 25-30 seizures a day," she said. "So when other kids were getting colors and numbers and letters into their working memory, she couldn't, because she was unconscious for so much of the day."
I’m here at New Scotland Elementary in Albany where big sisters Ila and Willow Buyce join Nova as she explains her epilepsy to pre-k classmates. pic.twitter.com/fiaCDsXr1W— Rachel Silberstein (@RachelSilby) November 22, 2019
During their presentation, Ila and Willow explained to the children how they learned to be "super attention heroes," trained to look for signs that Nova could be having a seizure. To help them be "super attention heroes," the girls urged Nova's classmates to "Look, Listen, Remember, and Understand." While Nova's seizures are now largely under control, she sometimes has mini-seizures, which cause her to stare into space and feel tired after the episode. If children see her stare, they must inform an adult, the girls said.
Soon all the preschoolers were anointed "super attention heroes," and the sisters handed out purple capes – the color of epilepsy awareness – much to the children's delight.
Little did the family know, the preschoolers had a surprise in store for Nova, too. Teachers Iesha Leigh and Meridith Dominy had sent letters home to parents asking for donations and on Friday they presented the Buyces with a $250 check made out to the Epilepsy Foundation.
Leigh, who previously taught Nova's older sisters, said the little girl was adjusting well to school.
With the exception of needing medication once a day, Leigh said Nova doesn't require any special accommodations and most children were previously unaware of her diagnosis.
"We treat her like any other child," Leigh said.