LEXINGTON, Ky. — Epilepsy is a disease that affects more than 3 million adults and nearly 500,000 children in the United States, according to the Center for Disease Control. Right here in Kentucky, a single mother and her eldest daughter are raising awareness of the disease via TikTok and Facebook.
Living with epilepsy has never been easy for Bella Menard. She is an 18-year-old girl with autism coupled with Lennox-Gastaut syndrome epilepsy. The serious illness makes daily chores difficult, so Bella relies on her Zodiac service dog.
The family lives in Cynthiana but often comes to Lexington for dinners with the University of Kentucky’s 4 Paws for Ability, a student-run group that trains service dogs.
“Paws up,” Cassidy Menard said.
Cassidy Menard is Bella’s older sister and caregiver alongside their mother Tanya Menard. Cassidy and Tanya have thankfully put their lives on hold to ensure Bella is taken care of to the best of their abilities.
Zodiac’s job is to comfort and alert the Ménard family when they have fits. The Menards say the Zodiac alerts are faster than any human could catch Bella’s seizures.
“We hear a bang in the house and automatically think it’s Bella having a fit,” Cassidy Menard said.
Bella’s LGS epilepsy became evident when she was just a baby. The disease resulted in the death of 30% of his brain. Nationwide, three million adults and nearly 500,000 children have epilepsy, according to the Center for Disease Control.
Cassidy and her mother Tanya have started using TikTok and Facebook to spread awareness of Bella’s condition and educate others. They uploaded a video of Tanya rushing towards Bella when Zodiac moaned, administering a vagus nerve stimulation device to nullify her seizures.
“Knowing that your sister has it [epilepsy]you just want to be there for them,” Cassidy Menard said.
Both Cassidy and Tanya are unable to work due to Bella’s conditions, which means relying on savings and odd jobs like sewing. The family has to make weekly visits to the doctor in Cincinnati, Ohio, which can be uncomfortable for Bella.
“I think if I hadn’t had Bella in my life and she had never been born, I would be such a different person,” Cassidy Menard said.
According to the Menards, caring for people with epilepsy can sometimes be difficult, as it takes a team for even the simplest tasks, like going out to eat in Lexington. This requires constant communication and strategy.
“We try to embrace every easy day we have and every positive day we have and make the tough days positive,” Tanya Menard said.
It’s hard for Bella to speak because of her conditions, but her smile means more than words. When possible, Bella is able to say a few words and speak softly, but relies on her iPad for steady communication.
“I know at some point we’re going to lose her, and my first thought is which disabled child can I adopt?” said Cassidy Menard.
For now, the Menards say they just want to make sure Bella is comfortable as they fill out her to-do list. To increase Bella’s comfort, the family strives to purchase a wheelchair-accessible van through fundraising. To find out more, you can click here.