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Epilepsy Ontario video project highlights exceptional young woman’s life

April 24, 2014

Seventeen-year-old Lia Turner says she hopes a series of videos documenting her life will send a positive message about how people can live with epilepsy and be thriving and productive.

The videos are part of a project Epilepsy Ontario has embarked upon in collaboration with Universus Media Group Inc., the company that created the videos.

Lia’s family members, friends and her equestrian coach are all featured in the videos. One thing that shines through with all the people interviewed is that Lia is a determined young woman who lets nothing get in the way of her dreams and ambitions.

A talented horse-rider, Lia has a close relationship with her horse, Echo. Lia and Echo are seen several times in the videos, and this bond is something Lia is proud to share.

“I was really honoured that they chose to shine light on my relationship with my horse because that’s so special to me,” she tells Voices of Epilepsy.

Lia is also touched that the filmmakers interviewed her grandparents, Rudy and Agatha Platiel; her mother, Tina; and friend, Ben Howlett.

“That was really amazing because it focused on my bond with them and how they deal with my epilepsy,” she says.

“Epilepsy is not something that just I have to deal with, it’s something that everyone I love and who loves me has to deal with as well. I’m really glad that they chose to share my story and I hope that the public is able to see the depth and the complexity of the support that I receive from my family. I hope (people) take that message away.”

Universus produced the videos pro bono. Universus was first connected with Epilepsy Ontario last autumn when the media company filmed a video for the Canadian premiere of the documentary On the Edge: Living with Epilepsy.

Universus president Niel Hiscox says his company was inspired to produce the video for free as a way of giving back to the community. The cost of producing the videos would have been substantial, but Universus saw an opportunity that far outweighed financial gain.

Lia’s story, says Hiscox, is a story too powerful not to be told.
“We knew that we could give back in a way that would actually have a multiplier effect; by donating the value of the video, in fact, we were making a donation that was worth many times more (than a financial donation),” he says.

Lia says she hopes other people living with epilepsy see the videos and will be inspired to pursue their dreams and excel on the path they choose.

“I think it’s so important (for people with epilepsy to) start telling our stories and getting them out there,” she says.

Writer: Deron Hamel

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Mother educates school on epilepsy guide dogs after misunderstanding

April 17, 2014

When Suzy Cornish’s daughter Ashley, accompanied by her epilepsy guide dog, recently went to a Kitchener school to pick up the son of a family friend, she was met by a teacher who told her she couldn’t enter the school with a dog.

Ashley Cornish's epilepsy guide dog Flicka as a pup. — *Ashley Cornish’s epilepsy guide dog Flicka as a pup.*

Ashley explaining to the teacher that her dog, Flicka, was not a pet but an epilepsy guide dog (who was wearing a vest identifying her as such) that’s trained to respond to seizures made no difference to the teacher. Rules are rules, the teacher said.

When Suzy, who also lives with epilepsy, heard what happened, she paid the school a visit. She emphasizes that her intention was not to scold the teacher or get her into trouble but to advise the school’s staff members to take time to learn about epilepsy and why guide dogs play a crucial role in the lives of many people affected by epilepsy.

Seizure response dogs receive extensive training. If a person goes into seizure at home, the dogs are trained to press Lifeline buttons and even speed-dial buttons on cordless and mobile phones to alert emergency response teams of the situation. In public, the dogs will bark to attract attention, should their owner go into seizure.

The dogs are also trained to comfort people who have just had a seizure, snuggling against their owner to ease their anxiety.

What was frustrating for Suzy was the fact that the school has programs for students with special needs but somehow epilepsy slipped through the cracks of that definition.

Upon meeting with the teacher and principal, both admitted to Suzy they knew little about epilepsy. The school has students with physical disabilities, so Suzy asked if they’re discriminated against for using wheelchairs. The answer, of course, was no. Suzy explained that an epilepsy guide dog is an extension of a person who needs one just as much as a wheelchair is necessary for someone with a physical disability.

All in all, Suzy says the meeting was successful as the teacher and principal listened intently to her concerns and promises were made to discuss epilepsy guide dogs at the next staff meeting.

Suzy also recommended the teacher and principal contact Epilepsy Waterloo-Wellington to learn about seizure disorders and to take their learnings back to the school.

Given that an estimated one in every 100 Canadians is living with a seizure disorder, Suzy says it’s important for all schools to have protocols to create a safe environment for all students.

When Ashley was a high-school student, the principal at her school spent 16 hours with her and Suzy putting safety plans into place and learning about Ashley’s condition.

As for Flicka, the guide dog has had a positive impact on Ashley and everyone in her family in the two years she’s been in the Cornish household, Suzy says. Flicka not only helps Ashley out of seizures, she also alerts Suzy when a seizure has happened or is about to occur.

“I can go to sleep knowing that if (Ashley has a seizure) the dog is going to come into the room and wake me up,” she says.

Writer: Deron Hamel

Epilepsy Ontario asking for consistent legislation to protect students with chronic conditions

April 11, 2014

Ontario needs consistent legislation to ensure a safer public-school system for children with chronic medical conditions, including epilepsy, asthma and diabetes.

This was Epilepsy Ontario executive director Rozalyn Werner-Arcé’s message to the province’s standing committee on social policy during an April 8 public hearing at Queen’s Park.

Werner-Arcé joined education and health experts from across Ontario to speak to Bill 135, also called Ryan’s Law, and to address the committee about the need for encompassing legislation to better protect school children living with chronic conditions.

Bill 135, which has passed its second reading, is a private member’s bill introduced by Elgin-Middlesex-London MPP Jeff Yurek. It honours 12-year-old Ryan Gibbons, who died in October 2012 after suffering a severe asthma attack during recess at school in Straffordville, Ont.

Ryan’s Law is aimed at ensuring every child and teen with asthma attending Ontario public schools would be allowed to carry an inhaler at all times in case of emergency.

Given asthma’s prevalence in children — the Ontario Lung Association says about 20 per cent of children in the province have the condition — Werner-Arcé says Bill 135 addresses key issues to ensure safety in Ontario schools.

But epilepsy is also prevalent in Ontario students, with an estimated 10,000 children and teens across the province living with the condition. Werner-Arcé says children with epilepsy need to be able to have access to rescue medications, should they experience a seizure at school.

“Despite written doctor orders and parental wishes, staff may, and do, refuse to provide rescue medication for students with epilepsy,” Werner-Arcé told the standing committee, adding that to the best of their knowledge, only two public school boards in Ontario — Halton District School Board and Halton Catholic District School Board — have seizure-response protocols for students with epilepsy.

Additionally, Epilepsy Toronto is making strong headways in working with the Toronto District School Board’s mental health and well-being committee to create specific guidelines surrounding seizure protocol within all its schools.

“(Bill 135’s progress) is good news for kids with asthma but there is still work to be done to get legislation for the management of other medical conditions, like epilepsy, at schools,” Werner-Arcé tells Voices of Epilepsy. “We need to see legislation (to ensure safety for students with epilepsy) for sure because (school boards) are not doing it willingly.”

Werner-Arcé notes that the good news for students with epilepsy and other chronic conditions is that Education Minister Liz Sandals recently announced the ministry is going to be working with the Ontario Physical and Health Education to perform a review of how medical conditions are managed in schools.

Writer: Deron Hamel

Momentum around Purple Day growing at Queen’s Park

April 2, 2014

Engaging MPPs at Queen’s Park on Purple Day is paying off for Epilepsy Ontario, as evidenced by feedback the organization is getting from government officials.

Epilepsy Ontario representatives were at Queen’s Park on Purple Day (March 26) to raise awareness among MPPs about the issues people with epilepsy and their families are facing.

Pictured left to right are Dr. David Steven, neurosurgeon and co-director of London Health Sciences Centre’s (LHSC’s) epilepsy program; Mary McDonald, whose daughter is living with epilepsy; Health Minister Deb Matthews; Rozalyn Werner-Arce, Epilepsy Ontario executive director; Dr. Jorge Burneo, neurologist and co-director of LHSC’s epilepsy program; and Carol Young-Ritchie, vice-president of patient centred care at LHSC.

“We heard that epilepsy has a much higher profile at Queen’s Park,” says Epilepsy Ontario executive director Rozalyn Werner-Arcé. “MPPs and bureaucrats are hearing about it, talking about it and remembering it. This is good feedback and a reinforcement that we need to keep doing what we are doing.

“Between Epilepsy Action Day at Queen’s Park in the fall and March 26, as well as ongoing communications both at the local level and provincially, our combined efforts are paying off.”

Meetings between government officials and Werner-Arcé and epilepsy information specialist Suzanne Nurse covered a myriad of topics. These include the need for legislation to allow teachers and staff members to administer rescue medications in school to children who may need them. The issue of how to deal with drug shortages to ensure the safety of people needing medications is never compromised was also a major topic.

Werner-Arcé and Nurse spoke about the current shortage of clobazam, an anti-seizure medication which has been in short supply for several weeks and is not anticipated to make a full return to Canadian pharmacies until May 8.

Werner-Arcé and Nurse also spoke to the Epilepsy Implementation Task Force and the opportunity to further engage community support organizations as a partner in the broader care cycle.

Werner-Arcé is also encouraging people with epilepsy and their families to reach out to their MPPs to invite them to special events and engage them through their organizations’ newsletters.

“It’s important to have those relationships and keep the dialogue going,” she says.

In the morning legislature session, MPPs Helena Jaczek and France Gélinas stated that there was all-party unanimous consent to permit MPPs to wear purple ribbons in recognition of Purple Day. In the afternoon, there were member statements about Purple Day by Bas Balkissoon from the Liberals and Christine Elliott from the Progressive Conservatives.

In her presentation, Elliot, Whitby-Oshawa MPP, took time to recognize Epilepsy Durham Region executive director Dianne McKenzie.

Purple Day was started in 2008 by Cassidy Megan, a nine-year-old Nova Scotia girl who is living with epilepsy. Purple Day events are now held worldwide.

Capping off Epilepsy Awareness Month, Health Minister Deb Matthews announced March 28 that the province is funding 21 new hospital beds for patients with epilepsy, more than doubling the number of existing hospital beds for patients with epilepsy in the province. There are currently 17 hospital beds funded for patients with epilepsy in Ontario.

The $8.7 million investment will help 750 people with epilepsy get quicker testing for drug-resistant epilepsy, the government says.

Writer: Deron Hamel