Friends, family and community members gathered at Bud Miller All Seasons Park on March 23 to show support and raise awareness for those affected by epilepsy. Jeannette Benoit-Leipert Meridian Source
Tina and Shawn Hurley never thought epilepsy could have such an impact on their family.
They began the Epilepsy Awareness Walk in Lloydminster in March of 2021 in memory of their late daughter, Shauna—the middle child in their family of three. Now, four years later, the walk has become an annual event set on remembrance and awareness.
The Hurleys say Shauna lived a very normal life and never let the disease conquer her spirit.
“She was a free-faller, she was a spirited lady. She liked to rock-climb. She won silver at the Winter Games in 2010. She was an amazing figure skater,” said Shawn.
“It’s hard now, talking about it—it seems so surreal.”
Shauna was diagnosed at the age of 11 and had minor seizures but none that would be described as ‘grand mal’, where the person loses consciousness.
So when she suddenly passed away in October of 2020, the Hurley family was blindsided. She had been on medication since diagnosis and hadn’t experienced a seizure in over 10 years.
“We were unaware that it would get to the point where she would pass away. You know, you can have seizures, but we did not know about SUDEP (Sudden Unexpected Death in Epilepsy),” said Tina.
“The amount of people who actually pass away from epilepsy is astonishing, and mostly about the age of 22-25,” said Shawn, adding one in 100 Canadians suffer from the disease.
That is why they decided they should create a walk in Lloyd to raise awareness and support for other families who are affected by epilepsy.
“We more or less want to bring awareness. We work with the epilepsy association in Calgary and Edmonton, we’ve kind of branched off from them,” said Tina.
“They give us the resources we need to host this.”
The Hurleys have created a friendship and offered support to another family who are in a very similar situation.
Wendy and Wade Spies lost their daughter Michelle to epilepsy as well, at the age of 24.
“She started having the seizures when she was seven, and they were kind of under control, but it just got worse towards the end, but she didn’t want them to affect her too much,” said Wade.
“She tried to live her life the best way she could.”
Michelle loved children and worked at a daycare until the seizures became too frequent.
“She was very social. She loved kids, she loved life,” said Wade.
“A lot of people don’t understand how serious it is. They figure it’s a fairly minor thing, but it’s getting worse and worse, so it’s just nice to bring awareness to it so people just understand it a little bit more.”
Another challenge those with epilepsy and their families face is it’s not recognized as a disability by the government.
“Believe it or not, it’s not recognized with the government as a disability versus like Type 1 diabetes is recognized as a disability, with tax credit and everything,” said Tina.
“The government isn’t recognizing how serious it can be. There’s a lot that’s not known. There’s no cure for it but there’s still research going on.”
For more information on epilepsy or to donate visit www.epilepsy.ca.
