Ohio

On anniversary of son’s death, Columbus mother raising awareness on epilepsy

COLUMBUS – November is Epilepsy Awareness Month and Robin Smith – who lost her son when he had a seizure at work – is hoping sharing his story can help spread more awareness about the disease.

November 21 is an emotional day for Smith of Columbus. She lost her 28-year-old son Justin Cruae five years ago on this day.

“He lived life to the fullest, and people with epilepsy can do that,” Smith said Monday.

Cruae’s seizures began when he was just 12 years old.

“He was getting ready for a football 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 never let it or the grand mal seizures define him. He loved playing sports, studying and reading, and eventually married and started a family after raising children.

“The little boy they adopted was the apple of Justin’s eye,” Smith said.

However, the path through his disorder was not always easy. Smith said they found a drug to control his seizures for the first few years, but when he turned 17 it stopped working.

“Through this process, we found that he couldn’t take generic drugs,” she said.

While dealing with insurance and struggling to find an effective drug, the family at times paid $900 a month for medication. Something that according to Kyle Austin, the owner of Pharm406, is not uncommon.

“If you get a generic drug, it might have 15% less active ingredient, and you won’t feel the same or respond the same on that drug,” Austin said.

He also said insurance companies that don’t help pay for a brand name drug instead of the generic version are “playing this game so they can take advantage of their side and not do the right thing at the end of the day.”

After 28 full years, Smith received a call that her son had died of a seizure while at work. The cause of death was given as “sudden unexpected death from epilepsy”.

“I didn’t want to believe it. Actually, I think all the way there I kept saying, you’re wrong, you’re wrong. But they weren’t,” Smith said.

Today, she remembers her son by looking at old photos and is thankful that technology can hear his voice. Now she wants to raise awareness by encouraging people with epilepsy to speak up. Something she regrets not having done more often with her son.

“It’s good to talk about it so people know they’re aware,” she said.

Calling attention to a disturbance she is feeling gets little attention.

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