COLUMBUS — November is Epilepsy Awareness Month and Robin Smith - who lost her son when he had a seizure at work – hopes sharing his story can help bring more awareness to the disorder.
For Smith of Columbus, Nov. 21 is an emotional day. She lost her 28-year-old son, Justin Cruae, on this day five years ago.
“He lived life to the fullest and, you know, people can with epilepsy,” Smith said Monday.
Cruae's seizures started when he was just 12.
“He was getting ready for a soccer game, and I heard a noise in the bathroom and the next thing I knew, he was having a seizure,” she said.
Her son was diagnosed with epilepsy, but he never let it, or the grand mal seizures, define him. He loved playing sports, learning and reading, and eventually got married and started a family after fostering children.
“The little boy that they adopted was the apple of Justin’s eye,” Smith said.
However, the journey through his disorder was not always easy. Smith said they found a medication to control his seizures for the first several years, but when he turned 17, it stopped working.
“Through that process, we found out that he wasn’t able to take generics,” she said.
While dealing with insurance and struggling to find a medication that worked, the family was paying $900 a month at one point for medication. Something that isn't unusual, according to the owner of Pharm406, Kyle Austin.
“If you get a generic, it could have 15% less active ingredient and you’re not going to feel the same on that medication, or respond the same,” Austin said.
He also said insurance companies that don't help pay for a name brand drug, rather than the generic version, are "playing this game so they can profiteer on their end, and not do what’s right at the end of the day.”
After 28 full years of life, Smith received the phone call that her son had died while at work following a seizure. His cause of death was listed as "sudden unexpected death in epilepsy."
“I didn’t want to believe it. In fact, I think all the way there, I kept saying, they’re mistaken, they’re mistaken. But they weren’t,” Smith said.
Today, she remembers her son by looking at old photos and is grateful for technology to be able to listen to his voice. Now, she wants to raise awareness by encouraging people with epilepsy to talk about it. Something she regrets not doing more often with her son.
“It’s good to talk about it, so people can know to be aware,” she said.
Bringing awareness to a disorder that she feels gets little attention.