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Three-time Olympian, Sam Edney, shows the helmet designed by Richard Flamenco, a teenager who suffers from a rare form of skin disease. On Saturday, Edney will wear the helmet in his World Cup race at Canada Olympic Park.Melissa Renwick/The Globe and Mail

Whenever Sam Edney puts on his helmet, he takes a moment to think of his new friend, the one who decorated Edney's headpiece so that it resembles a bear. "A ferocious bear," Edney explained. "Jaws opened, its paws coming up."

Just the sort of thing a ferocious luger would love. It is part of a program dubbed Helmets for Heroes, only it isn't Edney, a three-time Winter Olympian, who's the hero. That distinction belongs to the Calgary teenager with Dystrophic Recessive Epidermolysis Bullosa, a rare skin disorder that affects one in 50,000 people.

Richard Flamenco is the artist who drew the bear that Edney will wear in Saturday's World Cup race at Canada Olympic Park. Flamenco has been in hospital for many of his 19 years with a genetic disease that causes the skin to blister and turn fragile. There has been considerable damage to Flamenco's hands and fingers, making it especially difficult for him to draw.

And yet, his artwork is both skilled and inspired.

"I had so many ideas [for Edney's helmet] it was an eenie, meenie, miney, mo situation," Flamenco said. "I asked Sam if he had a favourite animal and he said, 'I like bears and sea otters.' We picked bears."

Helmets for Heroes is the brain child of Brad Spence, a former slalom skier on the Canadian national team who retired last August at the age of 30. In 2005, Spence had crashed while racing a downhill in Bormio, Italy. The fall tore up his right knee, shredding ligaments, breaking bones and leaving his Olympic dreams in a wounded heap.

He switched to the slalom and giant slalom events to go easy on his knees and recovered in time to qualify for the 2010 Vancouver Olympics and later the 2014 Sochi Olympics. In the lead-up to Russia, a friend who worked at the Alberta Children's Hospital oncology department told Spence about a 17-year-old girl who had osteosarcoma, bone cancer. Gillian O'Blenes, who had hoped to become a professional dancer, met with Spence and the two became friends.

It was O'Blenes who decorated Spence's helmet for Sochi. And while Spence was disqualified in his slalom run, he was thrilled to have been able to share his Olympic experience with O'Blenes.

Two months later, the cancer returned and this time it was diagnosed as terminal. As per her wishes, O'Blenes married her high school sweetheart, Michael Kaufman. Spence attended. His wedding gift was the helmet O'Blenes had designed for him.

Spence had hoped O'Blenes would be part of Friday's unveiling of Edney's new helmet, a continuation of what she had helped start. Sadly, O'Blenes died this past Monday night. Her memorial service is set for Saturday. Spence will speak of his favourite times with O'Blenes and what she meant to others.

"I just didn't realize the inspiration this has had on the people around us," Spence said of the story, which has appeared on television and social media along with newspapers and magazines. "It was this strange calling; my destiny to continue this journey and pay it forward. The challenge is to find a way to build it so that other kids and athletes could have the same experience."

The long-range goal for Helmets for Heroes is to widen its approach to include all sports, winter and summer, professional and amateur. There will also be a health component dealing with head injuries and concussions. The money raised will go to a designated organization. The Alberta Children's Hospital is this year's recipient.

Already, the plan is drawing interest. Several athletes have called Spence saying they want to help, and a bidder offered $5,000 to purchase the bear helmet Edney will wear in Saturday's luge competition.

"The first time I talked to Richard, he said, 'I always wanted to play sports with my friends – hockey, football,'" Edney said. "Because he couldn't play sports, Richard had a passion for art. When you see him doing the painting, it's so precise, so meticulous. It's crazy how real the bear's fur looks. It's a piece of art."

As for the artist: "It's been an amazing experience," Flamenco said.

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