Local boy faces a different kind of battle
Saturday, June 29, 2013
Sarah and Craig Clime’s families have always held an abiding respect for the U.S. military.
“I was brought up in a military family. My father served in Iraq,” she said.
Their household is filled with an array of Army memorabilia and soldier figurines. So it was no surprise when their younger son, 9-year-old T.J., was equally fascinated by soldiers and their livelihoods.
“Ever since T.J. was able to speak, he has talked about being in the Army,” she said.
Last Halloween, T.J. decided he wanted to be an “Army guy.” The mother and son sat down at the computer to look at costumes, until T.J. abruptly left the table.
“He seemed upset and as he walked away, he said, ‘I don’t want a costume now.’ I followed him and when I asked him why, he said that it was because he gets too tired to walk around the neighborhood.”
T.J. is afflicted with Duchenne Muscular Dystrophy, an inherited disorder that causes a person’s muscles to weaken quickly. The disease, which affects boys, is caused by a lack of dystrophin, a protein that reboosts muscle fiber strength and works to prevent muscle injury. Although T.J. is not permanently confined to a wheelchair yet, he tires easily and his condition is worsening.
She knew he already skipped the houses with steep stairs. She promised to push him the rest of the way in his new wheelchair.
He replied: “No, mom. Army guys aren’t in wheelchairs.”
When she heard T.J.’s sadness, Clime’s heart ached for him. It was another tough moment in what was becoming a torrent of grief.
“That was one of those times as a parent, you have to dig deeper than you ever thought possible for that positive attitude, put on a smile and try to come up with a worthy response,” she said. “I dug deeper, but hit rock bottom and still had no words of wisdom to give my son.”
She decided to leave the topic alone for a while. She didn’t know what to do. Push him to accept the wheelchair? Let him miss out on Halloween?
It was a moment when praying seemed to be the only thing to do.
She decided, one way or another, she was going to turn his wheelchair into a tank. Ultimately the costume was such a hit that one of the teachers — Emily Roberts at Jefferson City's Belair Elementary School — sent a photo of T.J.’s tank to her brother, Tom Whitener. Stationed in Afghanistan’s Khost Province, Whitener is a specialist in the U.S. Army Infantry’s 101st Airborne Division. Roberts included in her e-mail a letter T.J. wrote and a picture he drew of a flag on a hill.
“Do you miss your family?” the boy wrote.
“Yes, I miss my family. I miss my dog,” the soldier replied.
By March, Whitener asked if he could visit T.J. at his school. He showed up at lunch with a pizza to share. Later, he visited the Climes’ home. The two played with a remote-controlled helicopter, and T.J. showed Whitener his collection of toy guns. Whitener showed T.J. and his older brother, Connor, how to clear a room of enemies. The kids pored over the 2,000 pictures Whitener shot while in Afghanistan.
More importantly, Whitener talked about the disabled people he had seen serving overseas. He said he could see how T.J. might be a military contractor or help design the products that keep soldiers safe someday.
“He might not be on the front lines, but it doesn’t mean he’s not going to be a valuable member of the team,” Whitener said.
Clime said the soldier helped T.J. realize that “everyone has significant abilities” and everyone “is instrumental in the big picture.”
His words buoyed T.J. spirits, and they came at a time when the boy was feeling especially low. In late February, T.J. returned from a trip to see his doctors at the Kennedy Krieger Institute in Maryland, a clinic that specializes in treating Duchenne Muscular Dystrophy.
After seeing other patients, Clime knew her son was only beginning to comprehend the scope of his disease.
“When he came back from the doctors, he was very emotional. He was just trying to process it, the best that a 9-year-old can,” she said.
Coping with the diagnosis has been tough on the whole family. Whitener’s reaching out was a boost for everyone.
Whitener was glad to do it. Too many people in good physical condition don’t use their health to help others, he said.
“It’s refreshing when I get a chance to talk to talk to somebody who wants to do that ... who wants to be a positive person. It’s even better when you meet a kid like T.J. He’s young. He’s motivated. That alone is endearing. Anyone would want to foster that in a child,” Whitener said. “If they could find a cure, that would be outstanding.”
The Climes have not given up hope of a cure. They are in regular contact with elected officials in Washington, D.C., to raise awareness about the disease. And they have been raising funds in support of the “Parent Project Muscular Dystrophy.” For more information about that organization, visit www.EndDuchenne.org.
The Climes would like for the Federal Drug Administration to loosen its restrictions on experimental drugs.
“We respect the FDA’s stance, but we need to speed up the clock on getting drugs approved,” Clime said.
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