Jun. 4--PLATTSBURGH -- Andrew Barcomb can't wait to get behind the wheel of a real car.
"He wants his license," said Andrew's mother, Felicia.
But that's impossible, and not just because the 6-year-old drives a Power Wheels Mustang.
"I think about the things he's going to miss out on, and it tears me up inside," said Felicia, sitting beside her husband, Scott, on their living-room couch as Andrew played on the floor with Matchbox cars.
Andrew has muscular dystrophy and will face growing challenges as the disease progresses. His parents' small house is too restrictive for his condition, something that will worsen once he's using a wheelchair.
His teachers at Bailey Avenue Elementary School hope to change that. They've initiated a letter-writing campaign to charity mogul Oprah Winfrey to nominate Andrew and his family for "The Dream Home Makeover" giveaway.
"He has real difficulties going up and down the stairs and doesn't have a lot of room to move around," said Andrew's school aide, Beverly Chisholm.
"They (the Barcombs) have three other children, and they work hard. But with medical expenses and trying to remodel, it is impossible."
DIAGNOSIS
Andrew's parents became worried when their son was 6 months old and couldn't sit up without falling over or balance himself using the bars on his crib.
They took him to the doctor and were told he was fine.
Months later, he got extremely sick from an ear infection an ended up in the hospital where doctors discovered he had juvenile diabetes.
"We thought we figured out the problem," Scott said. "He just didn't have the insulin that helps build muscles."
But at 18 months, he wasn't crawling or waking and still fell over when they sat him upright.
They moved from Peru to Plattsburgh. Shortly after Andrew began attending Bailey Avenue, school nurse Jacqueline Bracy inquired about further testing.
He was diagnosed with Duchenne muscular dystrophy, characterized by decreasing muscle mass and progressive loss of muscle function in boys.
Children with this condition suffer progressive weakness of the legs and pelvis, and the loss of muscle mass spreads to the arms, neck and other areas.
By age 10, braces may be needed for walking, with most children in a wheelchair by 12.
Eventually, boys experience abnormal bone development that leads to skeletal deformities, progressive loss of movement and complete paralysis.
Most people with this type of the disease don't live past 30.
"There are all these time lines," Felicia said. "It's hard to focus on anything because you are consumed by what is going to happen to him."
ONE DAY AT A TIME
The only thing to do, said Scott, was to start taking life day by day and enjoying the time they have with Andrew.
Andrew receives pool, physical and occupational therapy.
"He tries so hard," his mother said. "He's stubborn."
He can't wait to attend a major car race with his father this month.
"I like racing because the cars go fast," Andrew said.
Felicia thinks about all the things her son will miss out on.
"We go the playground, and all the kids are running around playing, and he is lying in the sand playing with his cars and trucks."
Andrew must spread his legs and push off his arms bent over to stand upright.
TIGHT SPACE
His father is a correction officer in Dannemora, and his mother is employed by the Office of Children and Family Services.
They moved to their current home four to six months before learning of Andrew's condition.
"If I had known, I would never have bought this kind of house," Felicia said.
"This family has been through so much together, and yet they still persevere for the betterment of Andrew," said Bailey Avenue teacher Julie Bullis. "It's only a matter of time when Andrew will need a home that is wheelchair accessible."
Moving around the cramped house will become more and more difficult. There is no wheelchair ramp to get inside, and Andrew already has difficulty making it up and down the stairs.
Yet he seems surprisingly content, even after spending the first six weeks of school in a wheelchair with a broken arm and leg from falling twice due to his condition.
He beams bright-blue eyes at his teachers and offers a round, rosy-cheeked smile, calling their names from down the hall.
"He's always looking to help people," Felicia said.
sbartlett@pressrepublican.com
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