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Avalanche Helps Girl Raise Awareness for CRPS

03/26/2014, 11:45am EDT
By Greg Bates - Special to USAHockey.com

There’s a hockey stick that’s prominently displayed on the wall in Tori Bevan’s bedroom.

It’s not just any hockey stick, though. It was signed by the Colorado Avalanche players after Tori was chosen to help take the American flag onto the ice during a pregame Olympic send-off celebration at the Pepsi Center on Feb. 1. The ceremony was before the Avalanche’s final game before Paul Stastny of Team USA and three of his Avalanche teammates would head off to compete in the Winter Games.

Tori, who is 11 years old, proudly wore an Olympic jersey for her moment in the spotlight as her dad, mom, 8-year-old brother and grandparents looked on.

“That was like one of the best days ever,” Tori said. “I was super happy the rest of the day.”

It was a day that Tori won’t soon forget. It also made her forget about what she’s had to deal with the past two-plus years.

“It was just amazing to be out there,” Tori said. “I wasn’t in a flare up at that time, so it was really neat to stand out there.”

Tori suffers from complex regional pain syndrome (CRPS) that a lot of time makes life difficult for the youngster. But Tori has been a fighter since be diagnosed with the rare chronic disease in 2011.

“She experiences flare-ups where there’s extreme pain that’s comparable to, for instance, a blow torch being on the skin, is how it’s most commonly described,” said Tori’s dad, Ashley. “Our attitude and our outlook and her outlook for the most part is no matter what’s going on with the disease, she’ll continue to do the things in life that she loves the most — whether that’s sports, whether that’s after-school activities. We fight through pain, if you will, and she has good days and bad days.”

The fifth-grader at Broadmoor Elementary School in Colorado Springs, Colo., tries to be a normal kid despite dealing with the intense pain. Recently, Tori had a few flare-ups and had to miss some school.

However, the disease rarely stops her from playing hockey. Tori has been competing on the ice since she was 4 and is currently a second-year Squirt. She’s excited to move up to Peewees next season.

“I hope that everybody realizes that even though I have an illness that may never ever go away, I can still do everything that a normal 11-year-old kid can do,” Tori said.

Tori isn’t the only hockey player in her family. Tori’s parents both play, as does her brother, Grant. When she’s not on the ice, Tori likes to watch her favorite sport. Her family tries to attend as many Avalanche and Colorado College games as possible.

Being able to be on the ice before a National Hockey League game is generally a once-in-a-lifetime experience for a youth hockey player. Tori, however, will get another opportunity.

For every home game, the Avalanche picks an honorary youth skater who leads the players onto the ice just before the puck drops. Youth hockey associations in Colorado are able to nominate players who have inspired those around them or have enduring a hardship. Tori was nominated by the Colorado Springs Amateur Hockey Association, and the Avalanche couldn’t say no to Tori.

“When I read Tori’s nomination and all of the struggles she has gone through facing her disease, I was very touched,” said Avalanche Coordinator Community Relations Valerie Holland. “After meeting her the first time, I knew that I had to bring her back to get to experience our youth skater program as well. She has such a great attitude and just seemed to be thankful for everything she had.”

Prior to the Colorado’s game against the Vancouver Canucks on Thursday, Tori will be presented an Avalanche jersey with her name on the back. She will then lead the Avalanche players onto the ice and will have her name and hockey association announced over the public address system during introductions.

Tori can’t wait to get onto the ice again, this time around as an advocate for CRPS.

“Our goal is to just continue to raise awareness and, just like any other rare disease, finding a cure is paramount,” Ashley Bevan said. “Whatever we can do on our part to a small degree we’ll continue to do in hockey circles, and hockey’s a great community.”

Story from Red Line Editorial, Inc.

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