Fair veterans have hope for future

Wednesday, July 28, 2010

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Staff photo by JAY FRIESS
Samantha Pfeiffer of Port Republic, left, and Kyle Miller of Chaptico are two children who could benefit from the Southern Maryland Muscular Dystrophy Association's 24th annual yard fair, scheduled for Sept. 6, at the Charlotte Hall Farmers' Market.

When the Southern Maryland chapter of the Muscular Dystrophy Association holds its 24th annual yard fair at the Charlotte Hall Farmers' Market this Labor Day, many of the families volunteering for the event will do so with faith in the future.

For the veteran volunteers whose MD-stricken children now are entering the later stages of the disease, the goal is to blaze an easier path for families who are just beginning to cope with the disease and keep the hope burning for a cure.

"To me, it's finding a cure so other families don't have to go through what we're going through," Darlene Miller of Chaptico said of what her fourth year of helping with the yard fair means to her.

Miller's grandson, Kyle, 8, suffers from centronuclear myopathy, one of the 43 muscle-wasting diseases that fall under the muscular dystrophy umbrella term. Since birth, he has been dependent on a ventilator to breathe and is now dependent on a wheelchair for mobility.

"He has one of the more severe forms," Miller said. "[MDA helps] as far as with his equipment and stuff."

The McAffery brothers, Christopher, 18, and Tyler, 19, of Lusby, have Duchenne muscular dystrophy, a less severe form of the disease. But they have reached the age where symptoms have begun to accelerate and they understand the social stigma of their condition. Their father, Bo McAffery, said his sons have lost interest in going to MDA's annual summer camps.

"They're not that big into it," McAffery said. "They're not into socializing just because they have a condition."

And McAffery said his family has had no trouble financially supporting the brothers, even though he noted, "There's a lot of things insurance won't cover."

However, McAffery said, "My sons have benefited from the MDA in terms that they maintain a clinic." The Greenbelt clinic, McAffery said, is staffed with physicians who are familiar with the symptoms and complications of MD, a rarity in most general hospitals.

"I know that they help a lot of other families," McAffery said. For that reason, he said he will be at the yard fair this year, as he has been for the last 10 years, unloading donated goods for sale.

McAffery will be joined by Joanne Rivers of St. Mary's City, who said she also plans to help unload the truck early in the morning and help with the sale. However, this year, Rivers said she will not be dressing as a clown or selling kisses as she has in years past. "I made a lot of money," Rivers said of her kissing sales. But Rivers said she had to donate a lot of her dignity to the effort. Rivers considered the indignity a small one compared to those her son, Ben, 15, must endure every day.

"Sit in a chair; don't move," Rivers said, explaining how it feels to be her son, who has severely limited motor ability. "When you get an itch on your nose, it's absolute torture."

Rivers recalled once scolding her son for berating his younger sister, only to be stunned by her son's frustrated response. "He said, ‘Mom, I can't slam my door or stomp away. All I have is my mouth,'" Rivers recalled.

Rivers said there are ideas for technologies and medical advances that could help her son if they ever were manufactured.

"There's stuff that we need for Ben that hasn't been invented," Rivers said, noting she and her husband have suffered back injuries and hernias from helping their son bathe and dress. "You improvise."

Rivers said she hopes that Southern Marylanders will join MDA families in investing in a future that mitigates or eradicates MD.

"They need to come," Rivers said. "Give as much money as you possibly can."


How to donate

The Southern Maryland Muscular Dystrophy Association is seeking donations for its 24th annual yard fair, scheduled for Sept. 6 at the Charlotte Hall Farmers' Market.

The association is seeking anything salable that is not "rusted, busted or broken."

No donation is too small.

To volunteer or drop off items, call Janet Nagle at 301-884-8195. To have items picked up, call Jimmy Miller at 301-752-3151 or David Adams at 301-884-2517.

For more information, go to SoMDMDA.org.