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This article was published 9/4/2013 (1595 days ago), so information in it may no longer be current.
Jody Zarn hasn’t even met one of the families she’s putting countless hours into helping.
The Riverbend resident is organizing the Laps for Life fundraiser in support of two children afflicted by Batten Disease, a nervous system disorder for which there is no cure. The run will take place April 27 at Kildonan Park at 9 a.m. Registration costs $15. Participants can complete anywhere from one to six 1.2-mile laps.
The fundraiser will go to support the North Kildonan-based Gair family, whose daughter Mackenzie (who will turn five on April 20) was diagnosed with the disease last May.
"When I heard about Mackenzie, I thought ‘We’ve got to do something to help them out,’" she said. "I grew up on a farm, and out there, if somebody runs into trouble, if they get hurt or get sick, it’s just a given that the community bands together."
The other family being supported is Zarn’s childhood friend, Trent Zazalak of Brandon, whose daughter Tatyanna has the disease. Zarn said her son attended the daycare Mackenzie now attends, and soon became inspired to do something to lend a hand to the two families.
Zarn first held a run in support of Winnipeg Harvest in November 2011, so she’s no stranger to fundraising.
Mackenzie’s mother, Tara, said she, husband Scott, and son Brycen are thrilled to get Zarn’s support for Mackenzie.
"We’re very grateful," she said. "I’ve been talking to her on Facebook and (we’ve been) texting each other. I think at the race will actually be the first time we meet her in person, and she’s really going out of her way to do so much for us and the Zazalaks."
Tara said participants will have the opportunity to meet Mackenzie on race day to help put a face to the condition.
She added that her family and the Zazalaks have become close since Mackenzie’s diagnosis, having hosted Tatyanna’s family twice when they’re in from Brandon.
"When we found out Mackenzie had Batten Disease, we searched it on the computer and Tatyanna’s Hope came up," said Tara. "After reading a bit, I realized she was from Brandon, Man.
"This is a rare disease, and I was shocked, but so thankful there was someone around that we could get in contact with."
Other fundraising events for Mackenzie’s Hope have included a Bud, Spud and Steak, an ice-fishing derby, and a Zumbathon. As well, Brycen set up an iced-tea stand last summer that raised nearly $300.
The family plans to use the proceeds to build a main-floor bedroom and bathroom for Mackenzie, and also plans to attend the Batten Disease Support and Research Association’s annual conference in Nashville this summer. The Gairs attended last year’s conference in Charlotte, N.C., and said it was a boost for their family.
They also expect other travel costs for appointments will crop up as time goes on.
More information on Mackenzie is available at www.mackenzieshope.com, while more information on Tatyanna is available at www.tatyannashope.com.
Those looking to register for the race can do so at http://www.events.runningroom.com/site/?raceId=8732 until April 25, or can register on race day, though only cash will be accepted at that time.
As well, Zarn hopes to garner prizes for the race. Those interested in contributing can contact her at 204-334-8489.