By Andy Ostmeyer
Earlier this year, Shelby Shores got into a bit of trouble at school.
Well, not so much at school, but at home. It was for something that Shelby did at school. Shelby is in the fifth grade and attends Carthage Middle School, and what she did was something that, on the surface, doesn’t seem like such a big deal. Shelby ran during her gym class.
One of Shelby’s friends saw her running and later mentioned it to her mom, who called Shelby’s mom, Claire.
“I told her that she knows she’s not supposed to be running, and she said, ‘But Mom, I just want to be like everyone else,’” Claire said.
Unfortunately, in some ways, Shelby is not like everyone else. Shelby has benign connective hypotonia, which is a fancy term for a form of muscular dystrophy that causes low muscle tone and strength, which makes a seemingly simple task such as running difficult.
There are a lot of tough things about muscular dystrophy but one of the toughest, I imagine, is dealing with the fact that you can’t do things other folks take for granted. For Shelby, Claire said, middle school has made her try to accept the fact that she has issues to deal with that her friends do not.
“It’s a constant balance,” Claire said. “She’s starting to see that she has to rely on people and she hates that.”
In elementary school, Shelby could walk the halls of Mark Twain, but she can’t do that at the much larger Middle School.
“She’s starting to learn her limitations,” Claire said.
Learning is one thing, accepting is another, and Shelby still has work to do in that area, Claire said. But if anyone can understand what Shelby is going through it’s her mother. Claire also has a form of muscular dystrophy, as did her late mother. Claire said that since muscular dystrophy is caused by a defective gene, it’s not uncommon for the disease to pop up in successive generations.
But things aren’t totally grim. A couple years ago Claire was researching MS on the Internet when she learned about Dr. Ronald Cohn, who specializes in researching and treating muscular dystrophy. Claire contacted Cohn by email and he responded, asking her to send him Shelby’s medical records.
Cohn then called Claire and said that if she and Shelby could get to Johns Hopkins he would see her for free. Since the trip was outside of the family’s budget, Claire turned to the folks at Children’s Miracle Network, who agreed to help pay for the trip.
It was a good investment. As it turns out, Cohn specializes in exactly the type of muscular dystrophy Shelby has. After an initial two-hour examination, he was able to set up a treatment regime. Since that visit Shelby travels to see Cohn once a year.
Recently, Cohn moved to a research center and hospital in Toronto, Canada, making a costly trip even more expensive.
Although CMN is still helping with basic travel costs the trip continues to strain the family’s budget, which is something the faculty and staff at Carthage Middle School are trying to do something about.
On Saturday, March 2, a group of teachers and administers helped out by some nice students at Missouri Southern State University will face off against a team of KSN and KODE TV news folks in a charity basketball game.
The game gets under way at 2 p.m. Admission is $5 for adults and $3 for children with children under the age of two admitted free. Hank Rotten Jr., a man whose heart is as big as he is, will emcee the event which, alone, is worth the price of admission. During half-time, a number of pies donated by area businesses will be auctioned. All proceeds from the game and auction will be used to help offset travel costs associated with the family’s trips to Toronto.
It’s a neat deal. A bunch of nice people doing something to help a nice family who is deserving of that help.
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