Disease can’t stop teen skier

Sit-skier Tanner Fandrey hopes to qualify for the national para-alpine race team after being diagnosed with a disease that kills his bones.

By Catharina de Waal

Keeping up with Tanner Fandrey is virtually impossible when he skies down the mountain at 110 kilometres per hour. He never hesitates catching air on a jump and he carves so tightly that snow clouds form when his elbows brush against the slope. This he does all on one ski, while sitting down.

Sixteen-year-old Fandrey, one of the youngest Canadians ever to be diagnosed with a genetic autoimmune disease called avascular necrosis, hopes to qualify for the Canadian national para-alpine race team this year. This is his third season skiing with a sit-skiing, also known as a bucket, and his second season skiing on the Alberta disabled race team.

“Luckily going really fast is my favourite thing,” says Fandrey. “When you go as fast as 110 km/hr you feel in control and completely out of control at the same time.  It’s amazing. I love it.”

“To make the national team you have to work your balls off,” says Fandrey, who is the only sit-skier on the Alberta disabled race team. “I still have three more races this year, so if I get under 200 points this year then I will train with the prospect team. That is what I’m working towards so I can make the national team.”

In para-alpine skiing, a skier receives 1,000 points at the start of the season. Depending on how a skier ranks in the race, points are subtracted from 1,000.  A first place finish will have more points subtracted than a second place finish. If a skier is unable to make it under 200 points in a season, they start back at 1,000 points the following year.

 

Fandrey says, “Skiing is a big part of my family culture. As soon as I could walk I was put on skies. So when I couldn’t ski standing up anymore because of my disease, I knew I had to figure out something to do. That is how I found the race team and I started skiing with a bucket.”

The disease

With avascular necrosis, cellular death occurs due to an interruption of the blood supply. This happens when the immune system attacks the body. In Fandrey’s case, it attacked his lower spine causing inflammation. There was no room for the inflammation to go except into both of his hip bones.

“As the inflammation kept building and building in my hips, it put pressure on all the blood vessels in my hips,” says Fandrey. “This is like putting an elastic band around your finger and cutting off your circulation. It did the same thing to my hip bones, killing the bones in both of my hips.”

In December, 2009, Fandrey had exploratory surgery on his right hip after experiencing extreme pain.  Doctors removed excess fluid in his hip but were baffled as to what was the cause of his pain since the hip bone looked normal.

“I couldn’t walk. I dragged my leg around everywhere,” says Fandrey. “When I moved my leg, there was this incredible pain because of all the pressure the inflammation put on the nerves.”

A year to the day later on Dec. 17, 2010, Fandrey’s other hip started to cause pain as well. He was referred to a specialist who did genetic testing and found the gene responsible for avascular necrosis. He was in stage three of a four-stage disease.

“Avascular necrosis usually happens in 70-year-old people.  My specialist had never seen it before in a person my age and to get it in both hips at the same time is unheard of,” says Fandrey. “At least now we can medicate it.”

The disease can’t be reversed, only prevented from getting worse. Fandrey is receiving an injection in his hip called Enbrel. That suppresses his immune system so it doesn’t attack his body. If his immune system is not controlled, the disease will fuse together the vertebrae in his spine to the point where he would no longer be able to turn his neck.

“One of the biggest things with this disease is that since it is in my spine, it actually affects my whole body,” says Fandrey.  “When I am driving down the road and I see bright lights, I will start crying instantly because the inflammation puts pressure on my optic nerves. It also puts pressure on the nerves going through my lungs, so if my spine is inflamed it will hurt when I breath.”

Standing, walking or jumping increases the inflammation in Fandrey’s hips and spine, which puts pressure on his nerves. This is why he must ski with a bucket.

The equipment

Fandrey’s bucket is a molded fibreglass seat attached to a dirt bike shock absorber that snaps into a binding. The binding is set to the maximum din of 20, compared to the 8 to 10 din that an average skier might use. The din determines how tight the binding holds the boot. This is done so that if Fandrey crashes, his ski will not dislodge from his bucket.

“As soon as I got my new bucket, I duct taped the whole thing up. If I crash and I don’t have the sides of the bucket duct taped next to the upper part of my legs, it rips apart the fibreglass,” says Fandrey.

A specific stiffer ski is then attached to the binding. A regular ski is designed to hold around 120 pounds per ski, but Fandrey puts 180 pounds on one ski. This is too much pressure for one edge and so if a regular ski was used, it would break.

To provide balance and pushing power, Fandrey uses two outriggers. These are like poles, but with small ski blades attached at the bottom.

“It took a long time to learn how to ski with a bucket. At first I was just side slipping and not really carving on an edge,” says Fandrey. “It was like that for the first year and then when I joined the racing team they really taught me how to reach out and carve on an edge. Carving probably took that entire next year to learn.”

After perfecting his carving, Fandrey started competing in races around the continent. On his bucket he has the logo sticker of every ski hill where he has skied with the team, making his bucket quite a colorful sight.

The races

The biggest racing event for Fandrey this season will take place in Park City, Utah, at the end of February. He will compete against skiers from across Canada, the U.S.A. and the world. He hopes to place in the top five in both slalom and giant slalom.

“Slalom has the smallest and tightest turns. I like slalom the best because I find that you have to be a lot quicker and a lot more aggressive than in giant slalom,” says Fandrey.

Fandrey races against individuals who have various degrees of disabilities, so he has to try to even out the playing field. Skiers are tested and ranked in different categories depending on how much muscle mass is affected by their specific condition. The less muscle mass a skier has, the higher factor a skier receives. The race time of a higher factor skier is decreased and the race time of a lower factor skier is increased.

The student

Fandrey is not just good at skiing. The grade 11 student is taking all International Baccalaureate courses at his high school in Red Deer, Alberta. He currently has an 86 per cent average even though he misses five weeks of school this year for skiing. After graduation, Fandrey plans to enroll in the engineering program at the University of Calgary.

“When I grow up I want to be a mechanical engineer. I want to build disabled sporting equipment,” says Fandrey. “The biggest benefit of me building disabled sporting equipment is that I can test it. Right now there isn’t one disabled sporting equipment designer out there that I know of that is actually disabled.”

The experience

Each year, if funds allow it, the team goes on a trip to a ski hill where they can train in the summer.

“This summer we are planning on going skiing in either Chile or New Zealand, which would be such a cool experience,” says Fandrey. “Or we might go to Mount Hood, which is in Oregon, where we went this past summer. You get to ski on a glacier. It’s really amazing.”

“Skiing on this team has really given me incredible experiences. I have gotten to see so many places. It really is a cool program and if I make the national team, it will only get better,” says Fandrey.