Anna Argaw: Remembering Nebyu

Nebyu Taddese and Anna Argaw

“I wanted to do something to remember him.”

When Anna Argaw’s son, Nebyu Taddese, was diagnosed with epilepsy it came as a shock. He was in Grade 10 and his seizures appeared suddenly. Even more shocking was his unexpected death from SUDEP only a few years later at the age of 19.

To hear Anna talk about her son is to learn a little about an amazing young man. A hockey player and President of his student council, he dreamed of being a sportscaster and was studying media and communications at the University of Toronto.

More than that, by all accounts he was an incredibly friendly, caring person. After he passed away friends and classmates described his willingness to lend a kind word or a supportive hand when someone was going through a hard time.

Nebyu refused to let epilepsy be an obstacle. He wasn’t ashamed of his epilepsy and didn’t try to hide it. His medications seemed to be working. He was a good student and was working at his summer job the same day Anna arrived home to find him in bed. He wouldn’t wake up.

Making the loss worse for Anna was the feeling that she had never prepared herself for the possibility that she could lose her son to epilepsy.

“I never heard that he could die from epilepsy, how serious it was. I was worried about the medication, or if he was going to be slowed down,” says Anna. “Maybe the doctors don’t want to scare people but I think it’s good for the family to know there is death from epilepsy; you’ll be prepared for it. Doctors should let you know that it can happen.”

Now Anna wants to help to keep Nebyu’s legacy going. She’s become very involved with Epilepsy Toronto, helping to raise awareness for Purple Day and organizing a team of walkers for Team Epilepsy Toronto at the Scotiabank Waterfront Marathon.

“When my son passed away I was shocked. Now I’m just missing him; it’s hard to accept,” she say.

“We need to educate people about epilepsy.”