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.”
