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 mom and her oldest daughter are spreading awareness about the disease through TikTok and Facebook.
Living with epilepsy has never been easy for Bella Menard. She’s an 18-year-old with autism coupled with Lennox-Gastaut Syndrome epilepsy. The severe disease makes everyday tasks difficult, which is why Bella relies on her service dog Zodiac.
The family lives in Cynthiana but often comes to Lexington for dinners with University of Kentucky’s 4 Paws for Ability, a student-led group that trains service dogs.
“Paws up,” Cassidy Menard said.
Cassidy Menard is Bella’s older sister and caregiver alongside their mother Tanya Menard. Both Cassidy and Tanya have happily put their lives on pause to make sure Bella is cared for to the best of their abilities.
Zodiac’s job is to comfort and alert the Menard family when she’s having seizures. The Menards say Zodiac’s alerts are faster than any human could catch Bella’s seizures.
“We hear a bang in the house and we automatically think it’s Bella having a seizure,” Cassidy Menard said.
Bella’s LGS epilepsy became apparent when she was just an infant. The disease has resulted in the death of 30% of her brain. Across the nation three million adults and nearly 500,000 children struggle with epilepsy, according to the Center for Disease Control.
Cassidy and her mother Tanya have started using TikTok and Facebook to spread awareness about Bella’s condition and to educate others. They’ve uploaded a video of Tanya rushing to Bella when Zodiac whimpers, administering a Vagus Nerve Stimulation device to override her seizures.
“To know that your sister has it [epilepsy], you just want to be there for them,” Cassidy Menard said.
Cassidy and Tanya are both unable to work because of Bella’s conditions, which means relying on savings and odd jobs like sewing. The family has to make weekly doctor’s visits to Cincinnati, Ohio, which can be uncomfortable car rides for Bella.
“I think that if I didn’t have Bella in my life and if 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 be hard sometimes, as it takes a team for even the simplest tasks, like going out to eat in Lexington. It takes constant communication and strategizing.
“We try to embrace every easy day we have and every positive day we have and make the hard days positive,” Tanya Menard said.
It’s hard for Bella to talk because of her conditions, but her smile means more than words. When possible, Bella is able to mouth some words and speak quietly but relies on her iPad for steady communication.
“I know that at some point we’re going to lose her, and my first thought is what child with a disability can I adopt?” Cassidy Menard said.
For now, the Menards say they just want to make sure Bella is comfortable as they’re fulfilling her bucket list. To increase Bella’s comfort, the family is working towards buying a wheelchair-accessible van through raising funds. To find out more, you can click here.