Boy, 14, completes cross-Canada trek, but still waiting for liver transplant
TORONTO (CP) - A 14-year-old Ontario boy who defied medical odds by completing a gruelling cross-Canada walk to galvanize support for organ donation says he's "sad and angry" that he's still waiting for a liver transplant.
"I'm very disappointed," Kristopher Knowles said Thursday, as he laced up for the final leg of his 3,000-kilometre trek. "I thought I'd receive it on my walk. But it didn't happen, so I'm kind of upset."
The youngster, who hails from Sarnia, began his journey almost a year ago. He suffers from a potentially fatal liver disease called biliary atresia that often kills children before their second birthday.
He's been waiting for an organ transplant his entire life, and has already endured 20 surgeries that have riddled his small belly with deep scars.
"I shouldn't be here or alive right now," Kristopher said. "The doctors don't know why I'm surviving."
He said his goals are modest: to experience high school, play hockey and do normal "kid stuff."
His mother, Sandra, said she's worn out by the wait.
"It's been a long 14 years. He needs to continue on with his life."
George Marcello, whose charity Step by Step sponsored the walk, said the government has neglected organ donation for too long. He is calling on Canada to adopt an "opt out" system of organ donation that would put every Canadian on a donor list, while giving individuals the right to be removed from the registry.
"Countries that have that system have a dramatic increase in organ donation," he said, adding that presumed consent exists in 22 countries.
Canada currently follows the opposite protocol, requiring interested donors to "opt in" by signing cards and informing their families of their wishes.
Last week, the NDP tabled a private member's bill on presumed consent in the Ontario legislature.
Marcello, who is a liver transplant recipient, said he spoke with Ontario Health Minister George Smitherman via teleconference Wednesday to promote the cause, but left disappointed.
"Politicians have a fear and are in doubt of how people will react to this," he said.
Smitherman's spokeswoman, Eva Lannon, said the health minister considers Kristopher a "health-care hero."
When asked if presumed consent was a government priority, she responded: "Our focus on this issue has been the renewal of the Trillium Gift of Life Network to enhance volumes. . . . So that's what we've been doing: encouraging people to sign their donor card."
Almost 4,000 Canadians are waiting for organ transplants, but Canada has one of the lowest rates of organ donation in the western world. Health Canada estimates that fewer than 15 in one million Canadians are donors.
That means about 150 people die each year waiting for transplants, the agency says.
A Leger poll earlier this year suggested that ethnic and religious issues may be a stumbling block, noting it is taboo in many non-western cultures to separate body parts after death.
from http://www.canada.com/health/story.html?id=e4769cf4-6f6b-4422-9610-0bf45a3ae22f
~Caley
