Doing his best to be a kid

At the age of 12, Brandon McArthur is a Special Olympian, an honor student, a race-car driver, a Boy Scout and a leading salesman. He even has an award named after him. But above all, Brandon McArthur is a kid.

After a day at school, he sits in a recliner in his parents' living room in rural Cape Girardeau County, stroking the week-old kitten in his lap with an unsteady hand and watching "Rugrats." His silence is sometimes mistaken by some for a sign of mental slowness, but his mind is sharp. It's his body that has failed him.

Periodically, his 9-year-old sister, Brittany, comes over and places a piece of chicken or a potato chip on his lips. He takes a bite and resumes petting and viewing without a word.

"He's not a big talker," explains his mother, Lisa McArthur. "He grins a lot."

Brandon has ataxia-telangiectasia, commonly referred to as A-T. It is a rare degenerative disease that has affected his muscles and his immune system. He is one of 500 children in the world known to have been born with it. It likely will kill him before he reaches age 18.

That fact has been a constant burden on his parents' minds for more than eight years.

Brandon's first four years were free of tumult, save for some sinus problems doctors said could be corrected with surgery he underwent in 1996. But when B.J. and Lisa McArthur enrolled their 5-year-old son in pre-kindergarten soccer the following year, they began to notice something strange.

"Most of the kids playing pre-K soccer are a little clumsy," Lisa McArthur says. "But we noticed that he wasn't keeping up with the other kids."

In addition, his sinus troubles were persisting even after the corrective procedure. When the McArthurs took Brandon to an allergy specialist in Cape Girardeau, he recommended a neurologist in Chesterfield, Mo. The neurologist diagnosed Brandon with A-T, a genetic disease. Both of Brandon's parents carry the gene.

The McArthurs first had Brittany tested. When those tests came out negative, Lisa McArthur searched out as much literature on the disease as she could obtain.

She learned how it would attack Brandon's muscles and render his immune system useless; it would probably confine him to a wheelchair before age 10. She learned that he was 1,000 times more likely to get cancer because he has the disease, and that he would be too weak to undergo radiation or intense chemotherapy treatment. She learned he probably would not see his late teens.

These points, she knew, were non-negotiable, but she realized that she and her husband did have an important choice: Let their seemingly doomed child do anything he wants or treat him like a normal kid. Their answer fell somewhere in between.

'It could always be worse'

Brandon fully understands his disease and what it means for his future. He turned 12 in January, and he knows that his life is only going to get harder. But essentially, he leads the life of an extraordinarily active boy.

Brandon attends five full days a week at North Elementary School, where he consistently is on the A Honor Roll. In addition he is a member of Jackson Boy Scout Troop 311. His old Cub Scout Pack 212 recently honored him with the Do Your Best Award for six years of dedicated service and for continually selling the most popcorn in the troop. Furthermore, they decided to rename the honor the Brandon McArthur Do Your Best Award and invited him to present it to the winner every year.

On weekends, Brandon races remote control cars with his dad at Arena Park in Cape Girardeau. He also competes in the annual Special Olympics. His sports are bowling, the tennis ball throw and the obstacle course, which is especially fun with the motorized wheelchair he's been driving since he was 8.

"What happens when you go too fast?" Lisa McArthur asks, trying to draw his gaze from the TV.

Brandon's eyes immediately turn toward the speaker, but his head is slow to turn. His mouth blossoms into a grin.

"Pop a wheelie," he mutters.

"He's very shy, but actually quite sociable when you start talking to him," his mother says. "I think the more he's around people the better he will be. If he were to stop the activity, I'm afraid he'd get worse."

That assessment appears to gain more credence every 21 days, when the McArthurs take Brandon to the St. Louis Children's Hospital for treatment.

"You see kids his age hooked to dialysis machines or waiting for kidneys," Lisa McArthur says. "It just reminds me that it could always be worse."

She said she repeats that phrase to herself every day as she watches her son grow up toward an uncertain future.

trehagen@semissourian.com

335-6611, extension 137