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Student gains strength from experience with epilepsy

July 24, 2014

Life for Samantha Hetherington changed on Nov. 11, 2011, when the then-15-year-old woke up on the floor of the living room in her family’s house, surrounded by paramedics, then being lifted onto a stretcher and taken to hospital.

*Samantha Hetherington is seen here with OBCL president Lawton Osler after receiving her scholarship.*

Hetherington had just experienced her first seizure. More seizures would follow, and she was put on medication which helped control her epilepsy, but the seizures continued.

Hetherington had seizures at school and she’d have to stay home the next few days to recover. This caused her to fall behind in her classes. Then there was the sting she felt from epilepsy’s social stigma which compounded the depression she was experiencing.

But through the hardships came increasing confidence and a strong determination to not let her condition dominate her life.

“Personally, I never really think of my epilepsy as an illness,” she says. “I tend to think of it as just a part of me….”

Deanna Tremblay, a teacher at All Saints Catholic High School in Kanata, has worked with Hetherington for two years. Tremblay characterizes Hetherington as a student “who has persevered through a number of personal challenges.”

“She works hard to accept the realities of being a teenager with epilepsy,” Tremblay says. “Many of Samantha’s setbacks have required her to adapt to new plans, some of which have taken her out of her area of comfort, however, she strives to make a difference and make things work.”

Now 18, Hetherington is preparing to enter a new stage in life. A recent graduate of All Saints Catholic High School, the Ottawa resident is preparing to begin studies in the child and youth worker program at Algonquin College in September, thanks in part to an OBCL Epilepsy Scholarship she was recently awarded.

Hetherington says her experience with epilepsy has increased her sense of empathy and has set her on a career path where she can help others.

“I believe that I’ve learned how to better help people ever since being diagnosed and living with epilepsy and that, perhaps, is something that might never have occurred had I not had this journey.”

The OBCL Epilepsy Scholarship Awards were presented June 13 to six students in the province this year.

OBCL has been supporting students with epilepsy through the scholarship awards since 2006. Every year, up to 10 Ontario students win a $1,000 scholarship for post-secondary education. As part of their application package, students must submit a personal essay under that year’s theme.

Writer: Deron Hamel

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Dravet.ca hosting family retreat to increase community spirit

July 17, 2014

Dravet.ca, a grassroots organization of family members, friends and caregivers of people living with a Dravet spectrum disorder, is gearing up for a family retreat it’s organizing Sept. 12-14 at Circle Square Ranch in Brantford.

The event will be an “excellent opportunity” for families of people living with Dravet syndrome or a Dravet spectrum disorder to connect and share experiences in a fun atmosphere, says Guida Clozza, Dravet.ca’s vice-chair.

The event will also be a chance for young children with a Dravet spectrum disorder to meet others who are also living with similar circumstances so they know they’re not alone, Clozza adds.

A key part of the three-day retreat will be for children to spend time with the ranch’s horses. Activities such as horse grooming and trail walking as well as fishing, archery and rock-climbing, will also be available.

Because external factors such as hot weather can trigger seizures in people with a Dravet spectrum disorder, there will also be indoor activities, such as crafts, puzzles and movies, to ensure the weekend’s events are fully inclusive.

“We are hoping everyone feels like they’re part of a greater community,” Clozza says. “We want everyone to know that we’re there for them as a community and that there is support for them. That’s the key — for families to know they’re part of a community.”

Ankie Werdekker, Dravet.ca’s secretary, says events like this are important because Dravet spectrum disorders can be isolating for families.

“A lot of families think they’re going through this alone, but we’re all in the same boat here and we need to break the cycle of isolation that sometimes families put upon themselves for the sake of their kids, so they can be as normal as they can be, and get out into an environment,” she says. “For parents, it’s great to have the support of other people.”

Dravet.ca is hoping to see as many families as possible attend the retreat. It’s also an affordable event, Clozza notes, adding that the cost of two adults and one child attending will be $120, all-inclusive. Local families wishing to attend on the Saturday will only be charged $55.

The event’s registration is now open. The deadline for registration is July 31. Click here for more details.

On Sept. 20, Dravet.ca is hosting its third annual fundraiser, Walk for the Kids, at Constance Bay Community Centre in Woodlawn, Ont. The event will include a three-kilometre walk, face-painting, a silent auction, a fundraising barbecue, raffles and entertainment.

Dravet syndrome is a form of intractable epilepsy. Dravet.ca is the Canadian counterpart to U.S.-based Dravet.org . Much of Dravet.ca’s work is focused on educating families and the public about Dravet spectrum disorders through conferences, family retreats and lectures to the medical community, and collecting and disseminating information about Dravet spectrum disorders.

Writer: Deron Hamel

Lia Turner says epilepsy ‘changed my life for the better’

July 10, 2014

Seventeen-year-old Lia Turner was diagnosed with epilepsy seven years ago. Although living with a seizure disorder has had an impact on her life, it has never stopped her from pursuing her passions and dreams.

*OBCL scholarship recipient Lia Turner and Epilepsy Ontario executive director Rozalyn Werner-Arcé are seen here June 13 during the scholarship presentation.*

In fact, living with epilepsy has inspired Lia, who recently graduated from Aldershot High School in Burlington, to make a career helping others living with a seizure disorder. Her tenacity has also helped Lia earn a $1,000 OBCL Epilepsy Scholarship.

In the fall, Lia will be attending Carleton University in Ottawa. She plans to study cognitive science so she can help other people with epilepsy. Her scholarship is one step in helping Lia actualize her dream.

“My goal in life is not to hide from my disability but rather embrace it in this time of transition,” Lia says, adding she wants to incorporate her experience with epilepsy into her studies.

Lia says she has been interested in studying cognitive science for about two years.

Lia also says Epilepsy Ontario has helped open her eyes to a variety of possibilities. Through the organization she has written for Epilepsy Ontario’s blog in the Huffington Post and has shared her stories in previous editions of Voices of Epilepsy during the past year.

“For these opportunities, and the ones to come, I am eternally grateful,” she says.

Aside from her academic interests, Lia is actively involved with equestrianism. She has been riding horses since she was four, and rides competitively with her horse, Echo.

Lia underscores that what many people view as a disability has been a source of inspiration for her.

“I have never been more appreciative of my epilepsy, because it changed my life for the better,” she says. “It forced my perspective onto the goal of activism and making a difference, and that spirit of activism and change is something that I want people to see in me when I walk down the street.”

The OBCL Epilepsy Scholarship Awards were presented June 13 to six students in the province this year.

Writer: Deron Hamel

Student turning epilepsy diagnosis into a positive experience to help others

July 3, 2014

Suzanne McGuire’s life changed on Oct. 26, 2009.

That afternoon, the St. Catharines native was writing her fourth-year biomechanics midterm exam at Brock University when she suddenly woke up on the floor, surrounded by her classmates and a paramedic, who explained she had a seizure.

*Suzanne McGuire, far left, is seen here receiving an OBCL scholarship in 2013.*

After officially being diagnosed with epilepsy in January 2010, McGuire was presented with many challenges to complete her undergraduate degree in kinesiology. But she never gave up. In fact, she was encouraged by one of her professors, Dr. Jarold Cosby, to write an undergraduate thesis reflective of her personal experience with epilepsy.

Initially, McGuire planned to become a physiotherapist. But since her diagnosis, McGuire’s interest in epilepsy and helping others who have seizure disorders has mushroomed. Writing her undergraduate thesis on her experience inspired her to take things a step further and pursue a master’s degree.

“Through that experience, I decided I wanted to get the patients’ side out more to truly show academics and medical professionals what it really is like for patients,” says McGuire, who also serves on the board of directors for Epilepsy Niagara.

McGuire’s master’s thesis focuses on young women between 20 and 35 who have been living with epilepsy for at least one year. She’s in the process of interviewing women face to face to discuss their experiences of living with a seizure disorder.

Young women have a unique perspective on living with a seizure disorder, and McGuire wants to share their experiences through her thesis.

“There really isn’t a lot of connection for young women living with epilepsy, and (when women are young) there’s a lot of things changing in their lives,” she says.

“(Young women are) trying to become independent people, trying to start a career, marriage, children, all kinds of things, and through that I want them to express how they truly feel about living with epilepsy and how their experiences ultimately relate to whether or not or how they disclose their condition.”

Ultimately, McGuire says she wants to have her thesis published to provide the academic and medical communities with “a true patients’ experience” of what it’s like to live with a seizure disorder.

With more information available on the challenges young women face when living with epilepsy, more supportive resources may eventually become available, she says.

McGuire is actively seeking participants to interview for her thesis. If you are a woman, aged 20 to 35 who has had epilepsy for at least one year, please contact suzanne_mcguire(at)hotmail.com.

Writer: Deron Hamel