Fri Feb 03 2012
by Jeff Saunders
Reporter
Nordonia Hills -- It could be said that Courtney Murray is making lemonade from lemons.
The Lee Eaton fifth-grader, 11, was diagnosed with muscular dystrophy in December, but is already jumping into the challenge of helping to raise funds for research and speaking on behalf of the Muscular Dystrophy Association.
"She's such a ball of energy," said her mother, Macedonia resident Amy Koran.
Gina Kilberg, health care service coordinator with the MDA's Akron district office, said that Courtney arranged for her school to take part in the MDA's Shamrock Program, with students raising about $2,500 by selling paper shamrocks.
"The different classrooms had a competition to see which can raise the most," said Kilberg. "The winning class gets a pizza party and, of course, Courtney's class won."
Courtney said she is taking part in an MDA support group, learning such things as stretching exercises and nutrition.
"And I get to meet other kids with muscular dystrophy," she said.
She said she is excited at the prospect of going to an MDA summer camp this year, where her brother Zack, 17, and cousin Amanda, 21, are going to be counselors.
"My family has also gotten involved in raising money," she said.
She said her father, Spencer Murray, a self-employed carpenter, and her stepfather, Chris Chard, who owns a martial arts studio in Northfield Village, both sold shamrocks at work.
Kilberg said that Courtney is to be named the Akron district's goodwill ambassador. As such, she will appear at fundraising events in the 14 counties the district covers as "kind of like the local face of MDA."
"She's a delightful young girl and I feel very privileged about having her in the MDA family," said Kilberg.
Courtney has already made such an appearance when she gave a two-minute speech, talking about herself and her diagnosis, before about 400 firefighters attending the Ohio Association of Professional Firefighters state conference in Akron May 6. Kilberg said that with the International Association of Firefighters an official sponsor of MDA, firefighters are a major source of revenue and the MDA tries to have a presence at their events.
"Courtney's family have been very impassioned about getting involved in MDA," said Kilberg. "When our local director asked if I knew a local family to be there, Courtney's was at the top of my list."
Courtney not only spoke, she helped sell raffle tickets being sold by Akron firefighter Russ Brode, MDA's contact with the Akron Fire Department.
"Russ had sold $500 before Courtney began selling," said Kilberg. "She doubled the money in just the hour or two she was at the conference."
Kilberg said the raffle prize was a racing jacket donated by Goodyear Tire and Rubber Co. The firefighters were so taken with Courtney that many of them wrote her name on their tickets rather than their own. In the end, she said, they voted to cancel the raffle
and just give the jacket to Courtney.
Brode, accompanied by members of the Northfield Village Fire Department went to Lee Eaton and presented the jacket to Courtney, who in turn, presented the check for $1,140 raised by the raffle to the MDA.
"I'll have to wait a few years before I'll fit into it, but it was awesome," said Courtney.
Diagnosis is 'devastating'
Koran said the first inkling that something was wrong came last year when Courtney began falling. Koran said she did not think too much about it, but took her daughter to the doctor anyway.
The doctor, however, noticed that Courtney had enlarged calves and became concerned after learning from Koran that Courtney had problems with touching her toes or doing sit-ups.
"She said that with all of these things, she needed to see a neurologist," said Koran.
In September, the neurologist said he suspected Courtney may have a form of muscular dystrophy, but blood tests would have to be done.
"It took until December for all the DNA testing to come back," said Koran. "It was devastating, very devastating. You don't think your children are going to get something like that when they're born normal."
Koran said Courtney is still trying to adjust to her condition, but her involvement with MDA is helping a great deal.
"We're trying to focus on the positive. She can speak for those who can't," said Koran. "Courtney is meant to do this, to speak out and help raise money for a cure and they're getting closer to finding a cure. Hopefully they'll find one in her lifetime."
E-mail: jsaunders@recordpub.com
Phone: 330-688-0088 ext. 3169
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