Families face challenges of muscular dystrophy

Yard sale to aid in fighting disease

Wednesday, July 30, 2008

Click here to enlarge this photo Staff photos by REID SILVERMAN Six-year-old Kyle Miller, right center, plays with his grandmother, Darlene Miller, right, as family members Kayla Miller, 7, left, and Connor Miller, 2, and Krystal Kaldenbach look on at the Kaldenbach home in Avenue in June. Kyle and Connor have muscular dystrophy. A benefit yard sale to fight the disease is gearing up. E-Mail This Article | Print This Story Click here to enlarge this photo Kayla Miller, right, comforts her brother, Connor in his room.

Today Kyle, who has a form of muscular dystrophy, attends kindergarten at Green Holly Elementary School. ‘‘He’s a fighter,” said Miller. ‘‘He won’t give in. He’s always been treated like a normal child. He knows he’s different, but he doesn’t realize how different he is.”

In early June, Kyle won two awards at school. One was a good sportsmanship award from physical education class. Darlene Miller said he tries everything in phys. ed., even if he can’t do it. ‘‘He’s very smart,” she said.

Kyle uses a wheelchair and gets physical, occupational, and speech therapy. He also periodically requires a ventilator, and is fed through a tube.

Kyle’s half brother, 2-year-old Connor Miller, has the same form of muscular dystrophy, called X-linked myotubular myopathy. The disease is typically diagnosed in infancy, and causes profound loss of muscle tone, weakness of skeletal muscles and respiratory insufficiency.

Connor’s mother, Krystal Kaldenbach, said that though two cardiac arrests when he was 7 months old affected Connor cognitively, ‘‘he has a slapstick sense of humor.” He laughs when he thinks she’s falling, said Kaldenbach, and when she makes noises on his cheeks and tummy.

Connor requires care including bed baths, care of his tracheal tube, which helps him breathe, and breathing treatments. Kaldenbach has a nurse who comes in to help her, and also teachers who come to help Connor fingerpaint, play with Play-Doh and do arts and crafts. Kaldenbach said that as long as she can see Connor smile, ‘‘it makes it worth it.”

There are other children with muscular dystrophy in Southern Maryland, as well as a few adults, said Janet Nagle of Mechanicsville.

Nagle, whose son, John Nagle Jr., had muscular dystrophy, started a yard fair to benefit the Muscular Dystrophy Association in 1986, when John was 6.

The yard fair has been held annually ever since, at the farmer’s market in Charlotte Hall.

This year’s fair will be held Sept. 1.

The event started out small, said Nagle, and it has grown over the years. They made $1,200 the first year, she said, and now make about $10,000 on a typical day. In the past 21 years, the fair has raised over $100,000 for the MDA, Nagle said.

John Jr. died last year at age 26, and Janet Nagle now holds the fair in his memory. Before John died, he told his mother that ‘‘he wanted me to do it as long as I can,” she said.

The MDA provides medical clinics and helps with the cost of medical equipment. It also provides a week-long camp for children with muscular dystrophy.

Darlene Miller said the MDA helped Kyle get a power wheelchair and a cough assist machine. Kyle is constantly outgrowing equipment, she said, and will need a new chair in about a year. The MDA has helped Connor with wheelchairs and a special car seat, said Kaldenbach.

Nagle is asking for donations of items in good condition for the yard fair. Items donated in the past have included furniture, clothing, toys and appliances, she said. She is also looking for volunteers and business donations for the raffle stand.

Janet Nagle has also organized a support group for families dealing with muscular dystrophy.

‘‘We gather information, and we share with each other as well,” Nagle said.

‘‘We lean on Janet a lot for support,” Darlene Miller said.

Children like Connor and Kyle are special, Nagle said.

‘‘They teach you the value of life,” Miller said.