Author Archives: DHamel

How one mother’s fight for her daughter revolutionized school epilepsy policies

June 25, 2026

By Deron Hamel

Monica Diaz-Greco recalls how, after her daughter Emma was diagnosed with infantile spasms at seven months old, she and her husband, Daniel, knew immediately they wanted to do something to not just help Emma but also others living with epilepsy.

That impulse led the couple to co-found Emma IS, a nonprofit organization named for their daughter and infantile spasms (IS), as well as the organization’s tagline, “Emma is who Emma is,” aimed at raising awareness about epilepsy and challenging misconceptions about the condition. The organization eventually built a public presence and expanded its focus to broader epilepsy education.

In the coming years, Monica’s advocacy also moved into schools. An educator herself, Monica worked with schools and Epilepsy Toronto to develop Purple Day classroom materials designed to help teachers introduce epilepsy awareness in age-appropriate ways.

One of those lesson plans was later used in her daughter’s classroom during a Purple Day initiative, a moment Monica says carried special significance.

“That was very meaningful because we were trying to raise awareness as to what epilepsy is, and to have the first Purple Day (in Emma’s school district) using one of the lesson plans I created was especially meaningful,” Monica tells Voices of Epilepsy.

When Emma, who is now 12, entered elementary school, Monica began to see gaps in how epilepsy was understood and managed in educational settings. She says questions and concerns from schools often revealed uncertainty about how to support students who live with the condition, particularly around emergency medication.

That experience, she says, underscored for her that awareness alone was not always enough.

When Emma was in Grade 3, Monica was contacted by her school ahead of a field trip. Teachers were concerned about the possibility of having to administer emergency epilepsy medication to Emma if needed. For Monica, the experience highlighted how gaps in policy could affect students’ participation in everyday school activities.

This incident would lead to what is arguably Monica’s most notable achievement as an advocate: being a catalyst for getting Motion 68 passed at Queen’s Park in November 2023.

Motion 68, which was introduced by MPP Natalie Pierre, requires the Ministry of Education to institute policies across all school boards regarding the administration of epilepsy emergency medications in schools.

Monica recalls her reaction when the Motion 68 passed.

“It was so many emotions; I was so happy, I was sad that I had to fight so hard because it was a big fight to get to that point, but I was so thrilled that it happened as well,” she says.

Asked what advice she has for other parents advocating for their children, Monica says parents know their children best, and if something doesn’t feel right, they should go with that feeling.

“Ask questions, familiarize yourself with the policies,” she says. “Nobody is going to care as much about their kid as they are, so they have to speak up for their child.”

Judith Thompson brings epilepsy experience to debut novel

May 28, 2026

By Deron Hamel

After having a seizure at age 9, Judith Thompson says her parents urged her not to tell anyone because, they said, people would be frightened and avoid her.

Thompson, an award-winning Canadian playwright, screenwriter and recent first-time novelist, says her parents were doing what they thought was right and were trying to look out for her best interests.

“I had a seizure and my parents said, ‘No, she just fainted, that’s all’ – they didn’t want to accept it,” Thompson recalls in an interview with Voices of Epilepsy.

“Then I had another (seizure) in a crowded auditorium, which was so humiliating, and they told me not to tell anybody. They were just trying to think of me.”

But, against her parents’ advice, Thompson didn’t stay silent about her epilepsy – then or now – though she realizes many people did and continue to do so.

Decades later, Thompson is confronting that silence through In Crow’s Field, her new novel about a young girl and, later, a young woman dealing with trauma, bullying and epilepsy in the 1960s and 1970s.

A two-time Governor General’s Literary Award winner for drama and recipient of the Order of Canada, Thompson, in her debut novel, tells the coming-of-age story of Ana Burns, who is living with epilepsy and is haunted by a violent attack in childhood that led to the drowning death of her best friend, Patty.

Through the novel’s protagonist, Thompson addresses the stigma surrounding epilepsy, which, she says, was a driving force behind her inspiration to write the book.

“I realized there is very little out there in fiction, having main characters who live with epilepsy and cope with it quite well,” Thompson says. “We know our triggers, we learn our triggers, but sometimes they happen anyway. Yet there is extraordinary resilience in people living with epilepsy.”

Asked what she would like readers living with epilepsy to take away from In Crow’s Field, Thompson says she hopes they will see themselves reflected in the story and recognize that the condition does not have to define or limit their lives.

“I’m hoping that they see their experience and understand, also, that one can have agency because you feel passive in the face of something that could happen at any time, and that one can really punch back and lead a very busy and successful life,” she says.

“You don’t need to stop your life. You can have agency, you can be strong, and you can have an absolutely normal life.”

In Crow’s Field was published in April 2026 by Cormorant Books. Click here for more information. 

‘I remember their kindness’: seizure experience leads to paramedic dream for student

April 28, 2026

By Deron Hamel

When she was 15, Taylor Kepka didn’t know what was happening when she had her first seizure – only that she was scared, disoriented and suddenly needed help from strangers.

As frightening as this moment was, what stood out for her was the kindness she received from the paramedics who helped her that day. Years later, she says it’s that moment that set her on a path to do the same for others, inspiring her to pursue paramedic training at Humber College last September.

“I don’t remember much from that first experience, but I remember being scared and I remember the kindness that I got from the paramedics taking care of me,” Taylor tells Voices of Epilepsy.

“To this day, I remember this kindness which has made me want to become a paramedic on my own to take care of people who are scared and in the position that I was in and make them feel better just like the paramedics did for me.”

Taylor says she has faced several hurdles along the way to pursuing her dream of becoming a paramedic, including issues with her driver’s licence, which was previously suspended due to her epilepsy. However, since starting medication to manage her seizures, she has regained a valid licence.

Taylor is now focused on completing her paramedic training and building towards her future career in emergency response.

Taylor is one of four recipients of a $1,500 scholarship from Epilepsy Ontario. This financial support, she says, will help cover her costs, which include tuition as well as CPR and first-aid certification.

Taylor says if she could speak to her younger self, she would reassure her that everything would be OK. While epilepsy changed her life, she says it ultimately led to meaningful connections, new friendships and a clearer sense of direction.

“It has definitely thrown me some curveballs that I’ve had to overcome, but I wouldn’t change it,” she says. “I’ve made friends over it, I’ve connected with people because of it and I found what I want to do with my life because of it.”

Perhaps most importantly, Taylor says her future looks bright and she looks forward to helping others.

“I can’t wait to become a full-time paramedic and help people who were in the position that I was in,” she says.

Hidden, not rare: Why Alex Johnson is using a sweater to raise epilepsy awareness

March 26, 2026

By Deron Hamel

For Alex Johnson, the phrase “Epilepsy: Hidden, Not Rare” resonated with him when he saw it printed across a sweater at the Epilepsy Shop, Epilepsy Ontario’s online store.

Alex, who is living with epilepsy, says he felt a personal connection with the message, which prompted him to buy the sweater.

“The message reminded me that lots of people couldn’t see (my epilepsy), but I knew it existed,” Alex tells Voices of Epilepsy. “This was a message that really caught me.”

There were shirts and sweaters with other messages, but Alex says that one stood out most for him.

“It was a message that people needed to see and understand; it’s a message that should be reaching the public,” he says. “It’s not necessarily me saying something about myself, but it is something I am saying to the public.”

The Epilepsy Shop was launched in 2020 and sells an array of colourful T-shirts and hoodies embossed with campaign names to help support local epilepsy agencies and raise awareness of seizure disorders.

Customers can find regular T-shirts, women’s cut T-shirts or hoodies in a variety of colours and sizes. Every item is created on demand to eliminate waste, and all profits support epilepsy services and programs.

Alex says he would like to see more apparel with messaging directed at the public at large, which he believes would be a helpful way to increase epilepsy awareness.

He suggests that adding phrases like “There are Many Different Types of Seizures” or “One in 100” – a reference to the number of Canadian adults estimated to be living with epilepsy – would further educate the public.

This sort of messaging, Alex adds, is prominent on social media or in pamphlets during March – Epilepsy Awareness Month – but not throughout the rest of the year.

“The other 11 months of the year, nobody will know, nobody will see it on social media, but there is an opportunity to (send these messages) with shirts,” he says.

Click here to visit the Epilepsy Shop.