The Harkins household was a hockey home and Nicklas, the eldest of three boys, fell in love with the sport just the same.
Nicklas played so much when he was young that his curled fingers seemed a symptom of hands that never stopped clutching a stick. But as joint stiffness worsened and it became impossible to raise his hands above his head, increasingly concerned parents Todd and Kirsten took him to be tested. Suddenly the host of separate symptoms - umbilical hernia, poor eyesight, dental decay - didn't seem to be so isolated, and instead connected to the same, rare disorder: Mucopolysaccharide.
"It's multisystemic," said Kirsten, recalling doctors diagnosing her five-year-old son with the genetically inherited enzyme deficiency. "It would affect everything, vision, growth, respiratory, bones and joints... It was devastating. It's hard even thinking back to that time."
It can cause progressive damage to hearts, bones, joints, respiratory systems and sometimes the central nervous systems. MPS has a range of types and when Nicklas was diagnosed 15 years ago, some cases had a life expectancy under 10 years. At the time his father, now general manager of the Prince George Cougars, was ready to hang up his skates in Germany and got on the phone with one of the leading geneticists in Vancouver to get help for his son.
Now at age 21, so much has changed for Nicklas, in large part because of the Enzyme Replacement Therapy he still gets every single week. It took moving to Canada and a painful few years waiting for the drug's approval before Nicklas could take the life-saving infusion.
"Before I got my medicine my fingers were really curled and they're still curled. It's just how I am. I'm supposed to be six-foot-three but that affected my growth. My organs were a lot bigger than they were supposed to be but right when I got my medicine, my organs shrank to the right size. I used to be really stiff," said Nicklas, a University of Northern B.C. student and former assistant equipment manager for the Cougars.
In those early year Nicklas still lived to play hockey. Like his brothers, he was ferried from game to game, but once a week until he was 16, he'd lay in a hospital bed for eight hours of treatment, which have been reduced to a three-hour home infusion. When his condition stopped him from skating from rink end-to-end, he became a goalie.
While an average vertebrae has a square-like shape that stacks one on top of the other to form the spine, Nicklas is different.
"Mine are like triangles, oval, rectangles, but they're really wonky. It's like a jigsaw puzzle, so my neck is really unstable. I'm not allowed to go on trampolines or anything."
Eventually that meant giving up the dream his brothers Jansen, a current Cougars forward, and Jonas, a Cougars prospect, are still pursuing: playing in the NHL. Stopping the sport he'd played since he was young was a huge shift, but he notices it more now than he did then.
"It was hard, but it's probably more hard now because a lot of my friends play in the NHL." He can remember a time when his younger self was at the top of the game.
"People always remind me, so that's a little annoying," he said, but just as quickly added. "It goes in one ear out the other."
Nicklas said he brushes those moments off and he's always thinking about the next challenge he'll face.
"Whenever I do something it always feels like I've always got to prove people wrong. So once I accomplish something I try to do something else," he said, a feeling born from the judgment he gets from his appearance.
"We all have differences. Some are inside the body, some are outside. Your first impression should not be the way you treat someone."
He's still self-conscious about his hands, larger than he'd like and often stuffed in his pockets and out of sight.
For two years he took special care to walk on his tip-toe of one leg to off-set the other longer leg and have a less pronounced limp.
But he's excited to have that behind him after a hip surgery two weeks ago looked to fix the near two inches of difference between the legs. It's his 10th surgery in 21 years.
"I don't like looking at myself in the mirror because I know I look a little different from people. If I go apply somewhere, my resume will have to be 10 times better even though it's pretty strong. That's a little, not irritating, but upsetting," said Nicklas, who uses poetry as an outlet, one where he can express insecurities and fear.
He penned a piece before his hip surgery after hearing the doctor's warnings of the risk: "I need help," it began. "Too afraid to learn what the answer will be/ Feels as though I'm going to faint/ Inhale, exhale, repeat."
In it he asks: Why does this happen to me? But in person Harkins treats his condition with a resolute positivity. Better him deal with a sore hip than his brother. Better him suffer through the pain in his knee than his mother.
"I'm used to that kind of stuff so I can cope... I've sort of grown to accept it," he said. "I don't want any special treatment. I just want to be seen the same as anyone else."
It's also why he minimizes his involvement in activism around rare disease in Canada. He doesn't mind sharing his experience but he also doesn't want to dwell on his disease. Life is too short and he knows he's lucky compared to some with his condition.
"There are so many Canadians out there who need and deserve care," said Kirsten, who became an MPS advocate pretty much right after Nicklas' diagnosis. "I fully immersed myself and lived and breathed... and learned as much as I could."
In January, 10 years after the two joined a rally for rare disease treatment, they joined another panel discussion calling for a Canadian-wide rare disease strategy.
"We know how lucky I've been," Nicklas said. "I don't know how my life would be affected if I wasn't on (the medicine) but I know it would be a lot worse... so I just think everyone should be able to have the right to have as healthy a life as they can."
"There's still types of MPS with no treatment, so number one it's support, education, letting people know they're not isolated as they feel," said Kirsten, who served as Executive Director of the Canadian Society for MPS from 2004 to 2014.
Canada is one of the only developed countries not to have a rare disease plan, Kirsten said.
"In the absence of any federal leadership, patient groups have had to fight disease by disease, jurisdiction by jurisdiction, and sometimes patient by patient, to gain access to treatments," she said.
"The U.S. Orphan Drug Act of 1984 led to an explosion of rare disease research, and the EU and other countries have since followed with their own 'orphan drug' or rare disease plans. It's time that Canada joined in."
B.C. and Ontario have been leaders in her opinion in the last 15 years by recognizing the need for a "specific framework" to deal with rare disease.
"Basically, we have a real opportunity in Canada to go from worst to first in the area of rare diseases. There is so much best practice out there now and there are so many Canadians committed to bringing a rare disease strategy into fruition," Kirsten said.
For now, Nicklas is focused on realizing his dream another way. When he stopped playing hockey, he saw it as a challenge to develop other skills.
"It just made me think what else I can do to reach the NHL," said Nicklas who thinks a business or communications approach, possibly as a sports agent, might be his path to the league. And he thinks his experience in all those doctor appointments will inform how he treats players and families.
"They didn't just tell me about the good stuff, they also told me about what negative things could happen in procedures or long term health issues. I know that sense of caring so I want to give that to a player because I know some only focus on the positive stuff," he said, adding doctors also focused on his brothers and parents. "If you have a disability it doesn't just affect you, it affects your whole family."
Same with professional sports. It can be traumatic for a player to leave that support system and head for a new city. He thinks those conversations are important if you're looking out for a player's interests.
"So many focus on the money and just the player," said Harkins, who is considering a minor in psychology. "I could talk to them so the player feels more comfortable... I like making sure people are well taken care of."
