Winter was 15-year-old Jordan Fawcett’s favourite season. Every year, Jordan couldn’t wait to hit the slopes and participate in her favourite sport – skiing. She was an avid skier whose talent led her to compete for her high school at OFSAA in 2009. Tragically, Jordan’s life was cut short by Sudden, Unexpected and Unexplained Death in Epilepsy (SUDEP) on November 2, 2010.
“Jordan passed away only a year after she was diagnosed with epilepsy, and was considered extremely low risk for SUDEP,” said Jordan’s mother, Deb Fawcett. “SUDEP is still relatively unknown, so it’s very difficult to get funding for research. Our goal is to raise awareness and funds for SUDEP to help other families and kids like Jordan.”
On Friday, February 24, Deb and her husband Dave are hosting a ski event called Jordan’s Slide for SUDEP at the Beaver Valley Ski Club in Markdale in memory of their daughter. The event features skiing, snowboarding and snowshoeing, a buffet lunch, indoor activities, a silent auction, and an après ski social with a live band. Former Olympic and World Cup champion Todd Brooker will also be hosting a slalom race in memory of Jordan. Each ticket includes a lift pass, buffet lunch, t-shirt, and a donation to support SUDEP awareness and education work at The Hospital for Sick Children.
SUDEP occurs most often during sleep and there is no known cause. Lack of awareness makes it difficult to determine how many deaths occur as a result of SUDEP. Dr. Elizabeth Donner, a paediatric neurologist at SickKids, will be at the event to speak about epilepsy and explain our current understanding of SUDEP. Donner is a founder of SUDEP Aware, a Toronto-based organization that works to increase awareness and understanding of SUDEP.
“We are proud to celebrate and commemorate Jordan’s life through this event,” Deb said. “Jordan was always helping people, and we want to continue her legacy by helping other kids and families.”
To learn more about Jordan’s Slide for SUDEP, or to make a donation, please visit: www.sudepaware.org.
Hart Togman, 24, and Adam McClare, 26, have always enjoyed hiking and the outdoors – but last year, they took their passion for climbing to new heights by raising funds and awareness for cancer through an event called Summit for SickKids.
“We wanted to do more for cancer research, so we took a hobby we both enjoyed to create a unique event,” Hart said. “We didn’t want to do a stereotypical run for the cure.”
Last year, Hart and Adam climbed Mount Rainier in Washington, raising $15,000 for SickKids in the process. The money was donated to the Haematology/Oncology Department at SickKids and the Cancer Genetics Program.
“It was important that our event forced us to challenge ourselves both mentally and physically,” Adam said. “Both Hart and I have watched family members go through cancer, so we wanted to symbolize the struggle and challenges faced by those dealing with the disease.”
This year, they’ve set their sights on the 19,347 foot Mount Cotopaxi in Ecuador. For both Adam and Hart, the decision to give to SickKids was personal.
“My mother was diagnosed with cancer when I was three years old, and Hart and I both have a mutual friend who underwent treatment at SickKids,” Adam said. “SickKids has a huge research institute and we wanted to make a difference not only for children currently undergoing treatment, but also to fund new methods of treatment, and ideally, prevention.”
Two years ago, Hart watched his cousin go through cancer treatment at SickKids and saw first-hand the compassionate care the staff at SickKids provide. It helped inform their decision on where to allocate the funds raised from their climb.
“We decided to donate funds to the Cancer Genetics Program,” Hart said. “It’s relatively new and has limited funding, so our relatively small contribution can make a huge difference for these doctors and researchers and future generations of children with cancer.”
Adam and Hart hope to raise $20,000 this year for Summit for SickKids. They are holding a fundraiser called “A Night at the Summit” on Thursday, November 17, which features hors d’oeuvres, a DJ, dancing, a silent auction and more.
To learn more about Summit for SickKids, visit Hart and Adam’s website and Facebook page.
Written by guest blogger Dr. Joel Kirsh.
In two short days, I will be travelling north with two buses, 80 kids and 30 counsellors, on our way to what is increasingly known as “the best place in the universe.” Camp Oki is a summer camp like no other – it’s Canada’s first and only camp for kids with heart disease.
Camp Oki was created for kids who were “shut out” of mainstream camp programs due to a variety of cardiac conditions – and misperceptions of what these “kids with special hearts” could and couldn’t do. Thanks to our volunteers and generous donors, the camp has steadily grown from a long weekend program in 2004 for children with pacemakers and defibrillators to a week-long program for kids with any type of heart disease.
Camp Oki is a place where kids with heart disease can experience camp to the fullest – going tubing, swimming, playing sports, and making friends – a place where kids can, quite simply, be kids. At camp, they are encouraged to try new things – there is no sitting on the sidelines because you have a pacemaker or because you’ve had a heart transplant. Some of our campers first came to Camp Oki saying “I can’t do it”; they leave camp a week later saying, “I can do anything.”
This year, thanks to a generous donation from Cardiac Kids and The Firkin Group of Pubs, we are welcoming even more Camp Oki campers than before, at the Camp Oochigeas site in Rosseau. I’m excited about this new facility and looking forward to seeing both the new and familiar faces at camp this year.
Dr. Joel Kirsh is a staff cardiologist at The Hospital for Sick Children, a staff physician in Critical Care Medicine and an associate professor in Paediatrics at the University of Toronto. He is also the Founder and Medical Director of Camp Oki.