Imagine watching a loved one slowly wither and having no idea what's wrong, or how to save them. Michale Cerswell was a beautiful teenager with a wicked sense of humour. Along with her sisters Leysa, Naomi, and Andrea, she grew up on her father Jim's dairy farm located in Simcoe County, north of Toronto, Ontario. Their mother, Kelly Hall-Holland, was a chartered accountant.
At 14, in 1996, the family began to notice that after meals Michale would frequently slip away to the bathroom. They could hear her throwing up.
Michale had fallen victim to one of Canada's most common mental illnesses -- an eating disorder. One in five Canadian high school girls and one boy for every 10 girls will develop an eating disorder. One in 10 of those who develop anorexia die. Yet without a source of information or support for eating disorders in Simcoe County, the Cerswell family was lost.
"It seemed so foreign, it was so easy to be in denial," Leysa recalls.
Because Michale was able to hide many of the symptoms of her eating disorder, the family accepted Michale's reassurances. And for almost nine years, she struggled in near silence with her body issues, never seeking treatment.
Years of near-starvation exacted a toll on Michale's body. In 2005, she developed chronic pancreatitis -- one of many complications that can arise from eating disorders, along with kidney damage and heart problems. For the Cerswells, practically every moment of their lives from then on would revolve around supporting Michale in her fight to heal.
Jim put his career on hold to become his daughter's full-time caregiver. When she wasn't in the hospital, Michale lived with him on the family farm.
The greatest challenge was finding treatment.
"I can count the number of available child psychiatrists who are trained to treat eating disorders on two hands," laments Dr. Leora Pinhas, a past President of the Eating Disorders Association of Canada and a Senior Professor of Psychiatry at the University of Toronto.
Pinhas says there are only about 20 hospital treatment programs across Canada -- none in Saskatchewan, New Brunswick and P.E.I. There are approximately 20 hospital beds in all of Ontario.
As a further complication, Michale had become addicted to oxycontin, a powerful painkiller she was prescribed to manage the agony of the pancreatitis. Pinhas notes it's not uncommon for problems like drug addiction to walk arm-in-arm with eating disorders. Michale faced a catch-22 -- eating disorder programs wouldn't take patients with an addiction and addiction treatment programs were unequipped to handle eating disorders.
Unable to get treatment for her concurrent disorders in Canada, in 2008 Michale was admitted to an eating disorder program in the United States, paid for by the Canadian health care system. It is not known how much Canada spends to send patients to the U.S., however treatment there can cost more than $1,000 a day.
On July 26, 2009, Leysa spoke with her sister on the phone. Michale was hopeful -- the doctors were talking about releasing her soon. It was the last time Leysa would ever hear Michale's voice. Two days later, battered by 13 years of fighting, Michale's heart failed.
With Michale's death, the Cerswells have taken on the challenge of raising awareness and providing support for those suffering with eating disorders -- an often overlooked cause.
"We're trying to create the support we wish we had when Michale was alive," says Leysa.
The family launched the Michale Cerswell Foundation, fundraising to support families affected by an eating disorder. In the next few months the Foundation will help open the Riverstone Eating Disorders Recovery Centre in Shanty Bay, Ontario. Located in a peaceful rural setting, Riverstone Recovery Centre will offer an intensive day program to help families heal together.
Both parents are committed to supporting the cause. Hall-Holland has devoted her time and energy to developing Riverstone. Jim Cerswell helps raise awareness and financial support for Sheena's Place as well -- a support centre in Toronto for families affected by eating disorders. To raise funds and awareness, Jim and the sisters have produced a video about Michale's life.
Naomi is a passionate volunteer, raising money and awareness. Andrea, now a professional opera singer, performs at fundraisers. Leysa has set a career path to help others like Michale, earning a master's degree in psychology, studying mental health and substance abuse.
It is unconscionable that a young woman should starve to death in Canada today. We spoke with many experts and they are unequivocal: eating disorders are not a disease of choice or vanity, they are a serious mental illness. They are also entirely treatable if we invest the resources.
The Cerswells are an inspiration. This family has shown us how to come together to change a malfunctioning system in the memory of a beloved daughter and sister.
Craig and Marc Kielburger are founders of international charity and educational partner, Free The Children. Its youth empowerment event, We Day, is in eight cities across Canada this year, inspiring more than 100,000 attendees. For more information, visit www.weday.com
Follow Craig and Marc Kielburger on Twitter: www.twitter.com/craigkielburger