Ryan Johnson, Published July 30 2013
Hunter, N.D., teen heads to Disney World through Make-A-Wish
She’ll spend the next several days in Orlando, Fla., and visiting Walt Disney World today.
Her mother, Cheryl Murch, said it’s much more than a fun occasion – it’s a chance for the Hunter, N.D., teen battling a rare genetic disorder to spend time with others like her during the seventh cardiofaciocutaneous syndrome conference.
“It’s just such a tremendous opportunity for our family to be able to connect with the other kids and their parents that have the same issues going on that we have had,” Murch said.
Only about 400 people in the world have the syndrome caused by a genetic mutation that can result in developmental delays, heart defects, distinctive facial features and skin abnormalities. In Mandy’s case, it has meant slower than normal development, worsening seizures and the early stages of a heart condition doctors are monitoring.
The staff of Fargo’s Western Products, which raised several thousand dollars over the past two years to make the trip possible through the North Dakota Make-A-Wish Foundation, sponsored a sendoff celebration Tuesday with her friends and family.
The Murches “definitely deserve it,” said state Make-A-Wish Director of Program Services Kayla Foltz.
Western Products Accounting Assistant Sarah Kuznia said the business was just glad to be able to help.
“This was our goal, to sponsor a wish,” she said. “We’re so excited that we got to sponsor (Mandy’s) wish.”
Kuznia said the company has always valued giving back to the community. That kicked into overdrive two years ago when the staff started raising more than $7,000 to sponsor a wish.
“We had always kind of done these things to go to different charities at other times, but with the specific goal, you could tell there were more people that were stepping up and becoming involved,” she said.
Through silent auctions, company potlucks with cash donations, wagers on the Super Bowl and a $25 donation for each appointment booked through home shows, they raised enough to make it happen and were told a few months ago their work would help Mandy Murch.
Mandy’s father, Marty Murch, said the “unbelievable” act of generosity will allow him and his wife to learn more about the syndrome and give his daughter the chance to spend time with new friends.
“In this part of the country, that’s not an abnormal thing,” he said. “But when your family’s the recipient of this, it really kind of hits you that people do care that much.”
Cheryl Murch said it shows the kindness that’s out there, even if it can be overlooked at times.
“You hear stories about all the bad people out there, but it’s not that often that you hear about the good ones,” she said. “It’s awesome that there are people out there that will do this type of thing.”
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Ryan Johnson at (701) 241-5587