Halloween haunted house aims to educate about epilepsy

·2 min read

Joviah Butchike was diagnosed with epilepsy at the age of five, but living with the condition hasn't stopped her from dreaming big.

"I want to be a famous singer," said the 11-year-old Edmonton girl. "With epilepsy, you can still do whatever you want to do."

She wants others to know that the condition isn't something to be afraid of.

"Sometimes people are really scared and think it's contagious and stuff," Joviah said. "It affects you, but it's not the end of the world."

A haunted house set up in the front yard of the Edmonton Epilepsy Association on Groat Road and 112th Avenue aims to convey that message to the public.

The interactive display uses QR codes to take visitors to a hidden web page. From there, they can learn about famous artists who live with epilepsy and enter to win a prize by taking a quiz about the disorder.

"While it is a challenging disorder, people can learn to live with it," said Valeria Palladino, the association's executive director.

"Life doesn't stop because you have epilepsy, and especially from a child perspective, most children grow out of it."

Epilepsy is a brain condition that causes recurrent seizures. It affects about one per cent of the Canadian population.

The disorder has a genetic component but can also be caused by brain trauma, such as an injury or stroke.

The purple theme featured in the display is a nod to the Purple Pumpkin Project, a grassroot awareness campaign started in the United States by the father of a young boy with the condition.

Josee St-Onge/CBC
Josee St-Onge/CBC

Halloween decorations with strobe or flashing lights can trigger seizures in those who have photosensitive epilepsy.

Joviah has benign rolandic epilepsy, which triggers seizures in her sleep. Most children outgrow the condition by adolescence.

"It affects my sleep and I'll be really tired," Joviah told CBC in a recent interview. "Sometimes it affects me, I get really worried and I have anxiety. And sometimes I get headaches from it, too."

Her mother, Jennifer Butchike, appreciates the support her family receives through the Edmonton Epilepsy Association as Joviah learns to navigate her condition.

Joviah experienced a grand mal seizure at age five, which led to her diagnosis.

"We had no idea she had epilepsy," Jennifer recalled. "I'm so grateful to have that knowledge, to know that that's what was happening.

"She should be proud to show that you can live with it and do the many things that she does."