Subscribe
Community
Labor Day fundraiser to fight muscle disease
Organizers of annual yard sale seeking donations
Friday, May 29, 2009
 Click here to enlarge this photo Staff photo by JAY FRIESS
Kyle Miller, front left, and Darnell Holt, front right, are two of those who may benefit from this summer's Southern Maryland Muscular Dystrophy Association Yard Sale, scheduled for Labor Day. Organizers are looking for donations for this year's sale. Also pictured are Kayla Miller, Darlene Miller, John Nagle, Janet Nagle, Melissa Holt and D.J. Holt.
|
E-Mail This Article
As the Muscular Dystrophy Association of Southern Maryland prepares for its annual Labor Day yard fair fundraiser in Charlotte Hall, it competes for public attention with a litany of charities, advocacy groups and worthy causes.
But it only takes a few minutes of talking with muscular dystrophy patients to appreciate the insidiousness of the disease and the powerful impact it has on families.
Darnell Holt sat quietly in his powered wheelchair in the basement of Janet Nagle's home in Mechanicsville earlier this month. He wore a nervous, vulnerable smile and looked like any other high school freshman. But his mother explained why he isn't.
"He breaks [bones] easily and stuff," Melissa Holt said.
The Holts first learned of Darnell's condition when he was 8. In the process of simply tossing a foam rubber football, Darnell fractured his collar bone. The family soon learned that not only did Darnell have fragile, brittle bones; he also had Duchenne muscular dystrophy, one of 43 types of the muscle-wasting disease.
At a time when Darnell's peers are growing taller, stronger and more powerful, Darnell is losing his most basic muscular abilities.
"I worry about his safety, other kids picking on him," Melissa Holt said. She said that even a playful slap on the back could shatter her son's bones. Darnell already has 16 hairline fractures in his spine, some of which came from a nasty spill he took when his wheelchair hit uneven concrete.
"It's hard," Darnell Holt said. "I just have to look out for cracks in the concrete and stay safe."
Nagle, coordinator for the Southern Maryland chapter of MDA, remembered the frustration of her son, John, who died of Duchenne muscular dystrophy in 2007.
"My son always said, ‘I wish [the girls] would look at me and not my chair,'" Nagle said.
Melissa Holt said that MDA has helped her family secure the equipment needed to keep her son healthy and live somewhat normally, such as a lift and motorized bed. She is also thankful for an annual summer camp, which she said is as much for parents as patients.
"It's a vacation for us parents," Holt said, nothing that for a whole week each year, she can relax, knowing that her son is in good hands.
Darnell can still breathe normally, and he can still sit upright. Kyle Miller, 7, never got that chance. Kyle was born with centronuclear myopathy, a rarer variety of muscular dystrophy.
"When he was born, he wasn't moving, wasn't breathing, nothing," said his grandmother, Darlene Miller.
Kyle now breathes through a tracheal tube, since his lung muscles aren't powerful enough to draw air normally. His eyes flash with intelligence and frustration as he waves his limbs and purrs through his inarticulate throat to communicate.
But muscular dystrophy affects more than just motor skills. With his weak lungs, Kyle is unable to properly cough or expel infection.
"Their immune systems aren't strong," Darlene Miller said, explaining that it can take months to clear a common cold. "Kyle had pneumonia four times this year."
Janet Nagle said her son, John, also suffered greatly from common ailments. She said she once complained of a headache, and John sharply replied, "Mom, take a Tylenol and get over it."
But it's not as hard being a muscular dystrophy patient these days as it was in the past. Kyle has a specially outfitted go-kart and four-wheeler that allow him to get his kicks. And Darnell has a computer and the Internet to exercise his mind.
"The computer world has made it a lot better for them," said John Nagle, whose son was a prolific computer user. "There is so much they can do."
"They know more than I do!" said Melissa Holt.
"I think they are extraordinary people," John Nagle said.
"I think they're heroes," Janet Nagle agreed.
But the Holts, Millers and Nagles would like muscular dystrophy patients to live complete lives.
"[MDA's] main concern is working toward a cure for muscular dystrophy," Janet Nagle said. She and her husband have been doing their part to raise money for that effort for two decades.
On Labor Day, Sept. 7, they will hold the 22nd MDA Yard Fair at the Charlotte Hall Farmers Market; they need donated items to sell.
Janet Nagle said they will take "anything that's salable," but "nothing rusted, busted or broken."
Last year's event raised $11,000, and the Nagles say that the event has raised more than $100,000 for Maryland MDA in the last two decades.
To learn more
For more information on the Southern Maryland Muscular Dystrophy Association Yard Sale, scheduled for Sept. 7, and to learn how to make a donation, go to SoMDMDA.org.
