ALBANY, N.Y. (NEWS10) —Noelle Gentile is an Albany mom who decided to share her family’s journey with epilepsy through a new children’s book as she celebrates daughter Isla’s year and a half mark seizure-free.
March 26 is Purple Day—Epilepsy Awareness Day. According to the CDC, 3.4 million people have been diagnosed with epilepsy in the United States, and 470,000 of those people are children.
“When I wrote the book initially it was because we, I felt really alone,” Gentile said.
In February of 2016, Noelle’s daughter, Isla, was diagnosed with epilepsy at 3 years old. Then, for the three years that followed, the Gentile family was in and out of pediatric ICU. Isla tried up to seven kinds of prescriptions to stop her persistent seizures, but nothing seemed to help.
“Every week, she was having a major prolonged seizure, and our doctor said we were entering dangerous territory for SUDEP,” Gentile said.
According to the CDC, SUDEP means the possibility of Sudden Unexpected Death in Epilepsy.
“You get to bed at night and just really hope that you hear her voice in the morning,” Gentile said. “It was a really intense way to exist.”
And for Isla’s little sister Lucia—nicknamed Lulu—having her parents and Isla leave for the hospitals for random stints of time wasn’t easy to understand.
Noelle’s book—“Lulu and Isla“—is written from Lulu’s perspective and shows how although someone like Isla is different, that’s what makes her great.
And when News10’s Stephanie Rivas asked Lulu what her favorite part of the book was, she pointed to the page where the illustration depicted her and Isla in a tight embrace.
In 2019, Isla tried a new therapy called VNS. Gentile said the doctors wanted to try every medication possible before attempting VNS—a surgery that installs a device that sends pulses of electrical energy to the brain. Additionally, VNS had only been approved for children under the age of 12 for a few years.
Gentile said they had no choice but to try the therapy that could change Isla’s life. The surgery was successful, and Isla has been free of seizures ever since.
She’s not in the hospital constantly and dealing with wires on her head,” Gentile said.
Noelle said the family is just now starting to exhale and realize they’re in a new chapter. Also, the Gentile hopes her new book will inspire kids and adults to appreciate their differences more.
“Making space for exactly who someone is and to not try and change them to fit some idea of what is typical or normal, but to really welcome the full brilliance of who that person is,” Gentile said. “And Lulu and Isla do that for each other.”
If you or someone you know needs help with diagnosing epilepsy or treatment, you can reach out to the Epilepsy Foundation at Epilepsy.com.