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Kristopher Knowles’ wish is to stop waiting

14 year old has been waiting most of his life for a new liver



Kristopher Knowles lifts his Go Flames Go T-shirt to reveal a roadmap of scars criss-crossing his stomach, evidence of the approximately 20 surgeries the young man from Sarnia, Ontario has undergone in his 14 years. He is looking forward to one more operation, he just doesn’t know when it will be, or if it will be in time.

He shows his scars in the privacy of the modest Kristopher’s Wish RV that has been his home for the past 159 days on the road. Kristopher’s father, Kelly Knowles, is at the wheel of the motorhome. Videographer Merle Roberts and George Marcello travel in an accompanying car.

The four of them are crossing the country, in the tradition of Terry Fox, Steve Fonyo, Whistler’s John Ryan and others, to raise awareness about a medical issue. In Kristopher’s case it’s about organ donation. At any given time there are 4,000 people across Canada waiting for organs. Kristopher is one of them.

The Kristopher’s Wish tour left Sarnia on Jan. 8. Since then Kristopher has walked through much of Ontario – including northern Ontario in March – Manitoba, Saskatchewan, Alberta and part of B.C. He’s slogged through snow, rain, slush and some bitter cold days. He’s worn out three pairs of shoes and Monday, when in Whistler, he was battling the flu.

"Kris’s determination is amazing," says Marcello, who understands better than most what Kristopher has gone through.

Marcello is himself the beneficiary of a donated liver. To say thank you to the family that donated the organ and saved his life the fitness promoter decided, in 1997, to walk from Toronto to Ottawa to raise awareness about the importance of organ donation.

In 1998 he and fellow liver transplant recipient John Totten created the Step by Step Organ Transplant Association, a non-profit organization that promotes organ and tissue donations.

In 1999 Marcello did another Ontario walk, and was recognized for his efforts in the provincial Throne Speech that year. In 2000 Marcello began a 769-day walk across Canada. He recently completed that walk but Marcello still wanted to do more.

"We were looking for someone to pass the torch to, someone already out of school," Marcello said Monday. "But Kris was just so determined. So on Jan. 8 in Sarnia, we passed the torch to Kris."

Marcello says Canadians generally are open to donating their organs, but "nobody knows how to get a donor card. People just aren’t aware."

He wants provincial and federal governments to make the system simpler.

"We have the potential to save everyone, all 4,000 Canadians on the waiting list," Marcello says.

To do that he says three things need to happen:

• the system requiring family consent needs to be changed;

• heart-dead patients must be considered for donation, not only brain-dead patients;

• and more centres for organ retrieval must be established.

Kristopher, like Marcello before him, needs a new liver. He’ll get one when his father’s beeper goes off. That will be the signal that a donor has been found and the team will rush back to London, Ontario for Kristopher’s final operation.

He’s been waiting 13 years for the beeper to go off.

Kristopher was born nine weeks early, on April 29, 1990. After undergoing several life-saving operations, he developed a yellowish tinge to his skin. Tests finally revealed he had Biliary Atresia, a disease that affects one in every 10,000 to 20,000 infants soon after birth. The disease destroys bile ducts, which carry bile from the liver to the small intestine. The bile builds up in the liver and causes progressive damage to the organ tissue.

Just before his first birthday, Kristopher underwent a procedure which restored bile flow. The operation saved his life, but his liver had been permanently damaged. He’s been on a transplant waiting list ever since.

"I’m just trying to get my liver as well as help everyone else," Kristopher says of the tour.

When he’s not walking, the motorhome is Kristopher’s home away from home right now. The RV houses a small desk with a computer, cupboards and a bed. On one wall is a photo of Kristopher with his brother and sister. On the bed is a Toronto Maple Leafs blanket. He loves hockey. He says his life ambitions, in addition to getting a new liver, are to be a famous hockey player. Or a surgeon.

To find out more about Kristopher’s Wish visit

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