Kaylene Parent died in the prime of her life.
But the 23 year old who suffered from Cystic Fibrosis and her family knew from the cruel diagnosis at 14 months of age onwards that her life expectancy was simply destined to be shorter than most.
That’s why they didn’t confine Kaylene to a bubble desperate to keep environmental elements so hazardous to those with heavily compromised lungs and digestive tracts that characterize the genetic disease at bay. And they thanked God for every moment they spent with her.
Kaylene, who died due to complications from CF March 3, grew up in Prince George but she spent a significant amount of time with her grandparents Marina and Ralph Connors in Williams Lake.
And while the wound of Kaylene’s death is raw, the family is coming together to celebrate Parent’s life and to raise public awareness and funds for cystic fibrosis research during The Longest Game for Cystic Fibrosis.
It is a hockey game that is scheduled to last 10 days, breaking the Guinness World Record for the longest game of ice hockey.
The game started Aug. 26, and will end Sept. 5 at the Canlan Ice Sports Burnaby Rinks and be played by 40 women — doctors, nurses, physiotherapists and others who are involved in the fight against cystic fibrosis.
It is hoped the record will be beaten by 65 minutes — not an insignificant number. That number was chosen to honour another young woman who died of CF, Eva Markvoort, and her award-winning documentary 65 Red Roses.
In accordance with Guinness rules, 20 players are allowed per team.
There is to be no substituting players and all players must be present at the beginning of the game and can not leave the grounds until the attempt is over.
Kaylene’s mom, Angie, says Kaylene and hospital staff were on board with the idea of a longest hockey game as a fundraiser during one of her last stays in hospital.
At that time Kaylene had been placed on the list for a double lung transplant. She anticipated receiving those organs shortly and believed she would be in Burnaby to see the game and record attempt come to fruition. It was not to be, however, as medical staff discovered her heart was weaker than they thought.
Angie recalls Kaylene lived as regular a life as the disease would allow. Between annual visits to the hospital and bouts of sickness she lived life to the fullest.
“So many people who knew her didn’t even know she had CF.”
Of Kaylene, Marina said, “She was just an all around beautiful girl. We tried to let her lead as normal a life as possible.
“She always had a smile on her face. Even when she was sick she played practical jokes on the nurses in the hospital left, right and centre. We can’t believe she’s gone.”
Marina called the disease “devastating” and one that changes lives because it imposes so many restrictions on the victim and the family.
What’s been particularly hard is watching the effect Kaylene’s death has had on her young nephew. Marina said the two did everything together and it’s been difficult to explain to him Kaylene’s death.
He will drop the puck in Kaylene’s memory at the hockey game.
The current world record for the world’s longest hockey game was set Feb. 21, 2011 in Sherwood Park, Alta. at 242 hours. This all-women attempt will try for 243 hours and five minutes.
In this attempt, former Canadian National Women’s Ice Hockey Team goalie Danielle Dube and former Vancouver Canuck and Canadian National Men’s Ice Hockey Team member Cliff Ronning will be involved as a player and referee.
The goal is to raise $400,000 for CF research. Doors to the game will be open 24 hours a day. The public can follow the game on Twitter at @longestgame4cf; on Facebook at Longest Ice Hockey Game 4 CF or on the web at www.longestgame4cf.com.
Nine members of Kaylene’s family — including Angie and Marina and Ralph — and four friends will be on hand to volunteer during the game.
The puck dropped Friday, Aug. 26 at 8 a.m. The game will conclude Sept. 5 at 10 a.m.