Craig and Sara Clime have made sure their son T.J. experiences as much out of life as he can before the effects of his Duchenne Muscular Dystrophy prevent him from doing so.
That desire extends to T.J.'s friends, family, church and school, from which more than 400 runners and walkers turned out Saturday morning to help raise funds for the family to have a handicapped-accessible van.
Run Cupcake Run, which started at Thomas Jefferson Middle School, was more than a unique twist on a popular fundraising tool, it was an opportunity to raise awareness about the progressive muscle-wasting disorder, which claims mostly males generally by their mid-20s, Sara said. Also, as it's name suggests, Saturday's 5K event was complete with an optional cupcake station each mile.
The Belair Elementary School fifth-grader is bright, energetic, active and mischievous. He loves sports, art, video games, Legos and the outdoors.
Three years ago, the Clime family received his diagnosis, which actually came later than most Duchenne diagnoses, for which Sara said she was grateful.
Although the doctors tried to be helpful, offering Muscular Dystrophy Association literature and camp information, "it wasn't enough," Sara recalled. "We wanted to know what we can do."
As of now, Duchenne is terminal with no cure or treatments. However, a local doctor, who also has a son with Duchenne, shared some proactive work and clinical trials being done in Baltimore.
The Clime family has been traveling to the Kennedy Krieger Institute/John Hopkins Hospital several times annually to see specialists and receive treatments that might slow the symptoms.
"We want to do as much as we can now, to keep his muscles strong, to hopefully prolong his life and abilities," Sara said.
However, the Climes also want their son to get the most out of life, taking him on outings like go-karting and soccer, which may provoke his disease but, at the same time, offer them all cherished memories.
"It might be damaging ... but I will have a teenager in a wheelchair, whether he's 12 or 16, he still will not be walking," Sara said. "I'd rather him be able to say "I did that,' to let him live a little bit more.
"As a mom, I'd do anything for extra days with him, but not at the expense of him living a good life."
So, T.J. gets out on the Belair playground with the other students, he stays overnight with his best friend Jamisen Schwarzer and he's active in the cub scout unit and at Capital City Christian Church.
"We don't have to smother him," she said.
That was the case Saturday, as T.J., in his scooter, started the Run Cupcake Run with his family. The 3.1-mile course from the school along the Greenway and through Covington Gardens, was designed by Shanna Schwarzer, Jamisen's mother. The money raised will help to cover the costs of a new family vehicle, as well as contribute to their travel expenses, Schwarzer said.
A dinner and dance event is scheduled Oct. 17 at the Jefferson City Jaycees Fairground.
"Many Duchenne kids must move to be nearer their doctors," Schwarzer said. "We don't want them to leave; that's what started all of this off."
Throughout his years at Belair, administration and teachers have been equally supportive.
For example, it takes T.J. a few minutes to rise from sitting on the floor. So, rather than pointing attention at waiting on him, teachers would say "let's have a five-minute stretch" or something similar, Sara said.
"He's just a normal boy who needs a little extra attention," she said. "I have no doubt the staff have his best interests at heart."
The Climes, including older brother Connor, 14, are similarly appreciative of the support they've received from their community - some of whom are planning to install a wheelchair ramp to their own homes for T.J. to visit comfortably.
"It's heartwarming. As Mom and Dad, we know we're going to lose our child," Sara said. "But to know people will be at the end of that road to help us, to cheer us on; it doesn't feel so lonely."
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