When the Bough Breaks

Jada Snelgrove was 8 months old when she had her first seizure. The local hospital had limited paediatric infrastructure and expertise for diagnostic tests like MRIs and CAT scans. Consequently, it was unable to diagnose the problem. It took an excruciating 2 months, 23 seizures and a move to Ottawa General Hospital to finally determine Jada had Epilepsy.

“The first seizure was terrifying,” explains Jill Snelgrove, the self employed mother of young Jada. “She was seizing so hard she was blue. She couldn’t breathe.” Now four years old, Jada’s seizures are under control. It has been a struggle to find the right balance of medications, but things are working. Her last seizure was June 2011. “If I had to face it again,” she continues, “I would go straight to a teaching hospital like Sick Kids, Kingston or Ottawa”.

The fact is that with teaching hospitals and more focused research, the cause and treatment of Epilepsy is gaining new insights all the time. Jill is encouraged by what she is seeing within the Epileptic research community. There are new developments that may explain why Jada is afflicted with the disorder. The discovery is so new, presenting so much hope, that Jill hesitates to elaborate for fear of jinxing it somehow.

Despite this encouragement, life continues to be a challenge. Jill must assume the cost of a nanny to ensure someone is with Jada at all times and is frequently forced to take sick leave, losing income in order to care for her daughter. “Any cough or cold triggers a seizure. We can’t use daycare and we are not ‘disabled’ enough to get Homecare,” she says.

I ask her how she feels about Jada’s future. There is a moment of silence, her voice cracks as she holds back her tears. “We’re good,” she offers with a brave resolve, “Jada’s a tough cookie. We persevere. She’s not choking on food anymore and she is doing so well dancing ballet.”

Epilepsy research is of paramount importance to Jada’s developmental successes and the future well being of the Snelgrove family. With more funding the pain and suffering that families endure, will diminish. There is more than just better treatments and diagnosis at play. Even the smallest discovery provides hope to over 50 million*families like Jada’s, who live with the uncertainties of Epilepsy every single day.

*WHO Fact Sheet No. 999, January 2009

Personal Best – when friends make a difference

Darryl Schmidt was 8 miles into her first half marathon. Countless hours had been spent preparing for the challenge – a fundraising initiative for her friend’s epileptic son. Heading into the shady little town of Freemont, she began to wear out. Darkness was descending. Tired, sore and frustrated, doubt began to consume her. “I could just give up,” she thought. “This is too much. Is this really worth it?”

Anyone who attempts to run a marathon knows what it's like to hit the wall. But Darryl was determined. This was more than proving a personal best. She was running to raise money for Epilepsy, on behalf of her close friend and running mate Gerilee whose son was diagnosed at age 13. The trials of training and suffering in this race paled in comparison to the lifelong punishments of Epilepsy. There was no denying it, she needed to make it through.

Darryl met her friends Gerilee and Colleen through work at the College of the School of the Rockies. Each was seeking an active lifestyle and it wasn’t long before they started a running group. Aside from the health benefits, running began to serve a greater purpose. It was therapeutic, a time for Gerilee to share the frustrations of caring for a child with Epilepsy. “Watching from the sidelines you feel helpless” explains Darryl. “When we run, I just listen”.

One night while watching television Darryl was drawn to a story of a mother whose son was going blind and who started running to raise funds for research. She instantly thought, “Why can’t we do something like this for Gerilee and Jerry?” And so, the wheels were set in motion. Darryl was undertaking something profound, something that would demonstrate her desire to help Gerilee. The three women decided to go for it, to show Jerry that they were willing to challenge themselves on his behalf.

The half marathon pushed Daryl to her limits, but it is more than a memorable achievement. Darryl said, “This family is impressive. They never allow Epilepsy to hold Jerry back”. And while Jerry is now in his early twenties, an honours graduate in Statistics, with plans to enter a Masters program this Fall, his struggle to balance his disorder will be lifelong -- unless more people like Darryl take action.

Through the support of colleagues, friends and families, Darryl, Colleen and Gerilee raised $3000 for Epilepsy research. Darryl shows us that we can be more than bystanders in life...and if we decide to make a difference, we can.

Soaring high raises $3,200 for epilepsy research

The young indoor kite flyer from Oregon had just finished a beautiful and perfect performance. Standing somewhat dumbstruck on the stage, seventeen year old Connor Doran glanced over his shoulder seeking his mother backstage, questioning whether it was all for real. In two minutes, the length of time it took to audition for America’s Got Talent, his performance had made an indelible impression on the judges and the audience, and pushed back against the stigma of being labelled an epileptic.

Judge, Howie Mandel asked Connor why he flies kites and Connor opened his heart, “When I’m flying nobody can... nothing can touch me,” he added, “I’ve never thought about having a seizure.” Connor’s talent and testimony drew the attention of more than just the judges that night. The teen's success on the popular TV show has spawned a soaring interest in kite flying, and in particular the art of indoor kite flying. Recreational officer, Denis LeBlanc, of Dieppe New Brunswick quickly grasped the significance of Connor's accomplishments.

Dieppe, New Brunswick, a small community of 24,000 on the outskirts of Moncton, hosts over 45,000 people in mid August each summer to celebrate kite flying with performances at its International Kite Festival. Denis LeBlanc is in charge of orchestrating the event and has been doing so for the past three years. “Kite flying isn’t as easy as it looks. Manoeuvring a four line kite indoors without wind takes a lot of precision and practise” he explains.

Mr. Leblanc, invited Connor to perform at the 2011 event. The result was a win for kite flying and for Epilepsy Canada. Through the proceeds of a live auction of kites, the festival was able to raise and donate $3,200 to Epilepsy Canada for Epilepsy research. “It is the highest amount ever raised at this event,” LeBlanc adds. “There were kites being sold for four and five hundred dollars each”.

Together, Denis LeBlanc and the Connor Duran broke the silence that envelopes epilepsy. “Connor motivated us by being here,” concedes LeBlanc. “I know more about Epilepsy now because of him.” And so do another 45,000 kite flyers in Dieppe.

Say It Isn’t So – making education work with Epilepsy