Charity event raises thousands for Mitchell boy...
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Mar 23, 2014  |  Vote 0    0

Charity event raises thousands for Mitchell boy with rare disorder

Stratford Gazette

Jeff Heuchert

Thousands of dollars were raised Saturday during a charity volleyball tournament and silent auction to assist a Mitchell couple struggling to keep up with their son’s mounting medical bills.

John and Mary Jordan have three young children. Their youngest, Cohen, was diagnosed at an early age with a rare chromosomal disorder called aniridia. As a result, his vision is severely compromised to the point he has been deemed clinically blind. At the same time, he also suffers from a disorder called nystagmus, which causes involuntary movement of his eyes.

Cohen, 2, requires special treatment and devices, including corrective glasses with special lenses to enhance the little sight that he has left and to protect his eyes from light. His condition leaves his eyes very sensitive to any type of light. As he develops, he will also need equipment to help him learn Braille or large print, and there are ongoing expenses associated with traveling for regular appointments.

Saturday's fundraiser to help offset some of these costs was held simultaneously at Stratford Northwestern and St. Michael Catholic high schools, and was organized by Katie Horst and her teammates on the Diggers, a co-ed volleyball team that plays in Stratford that also includes John and Mary Jordan.

"We really felt like we had to do something for the family," Horst said on Saturday, noting John and Mary are hardworking parents who, through no fault of their own, are under tremendous financial pressure trying to provide for all three of their kids while still ensuring Cohen gets all the medical care he requires.

 "They just want to give the best life to each of them,” Horst added.

Planning for the fundraiser began in the fall. Flyers were distributed, a Facebook event page was created, and mention was made on the radio and in the family’s hometown newspaper leading up to the event. It all paid off. More than 100 players, mostly Mitchell and Stratford residents, signed up to participate. The silent auction included close to 90 gifts – all donated by businesses in the two communities. 

“It really was more than I expected,” Horst said, adding she anticipated the day would generate between $8,000 and $10,000 towards assisting Cohen in his development.

"It's nothing short of amazing," Mary Jordan smiled during a break in the action in the morning. "It just makes us realize that the people in our community do care, that they support us.”

The last two years have been, at times, “both frustrating and stressful,” she admitted.

While the family has been able to get support from the CNIB, Mary said they have found there is little funding available to support special needs children. Moreover, she noted the family doesn’t qualify for what funding there is because of their income.

At times it has been difficult to make ends meet, she said, and the family has had to make sacrifices.

“The cost for the specialized equipment is horrendous. And because the condition of (Cohen’s) eyes is changing so much, what he needs is always changing,” she added.

Among those helping out on Saturday was Colleen Roulston of Mitchell. She is married to John’s cousin, and said she was more than happy to help the family in any way she could.

It seems many people felt the same way, whether they were family or not.

“We’re just a community that helps people out,” Roulston said, noting the Jordans found themselves on the other side of the coin a few years ago, supporting a fundraiser in Mitchell for another family whose son is disabled. “It seems like the circle has come back around,” she added.

For Mary, Saturday’s fundraiser was a much needed boost, delivering more than some much needed money to help with her son’s ongoing medical costs.  

“I feel more confident in our ability to care for Cohen. It’s a comfort to know we don’t have to go at this alone,” she said.

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