A.J. Marx loves to sing.

He sings in the shower, and sings at home, and sometimes he sings at school.

He has a squeaky voice.

It betrays him on the high notes and every once in a while on the low ones. But he doesn't care. He sings because he loves it, and people should do the things they love.

"You have to cherish the day and what it brings you, you know?" he said last week.

A.J. is 14. He wears glasses and black New Balance sneakers.

He is like every 14-year-old boy who has ever walked down the hallway at his school, except he doesn't walk.

He carries his books on his wheelchair. He maneuvers his red-and-black power chair through the loud hallways at Horizon Middle School. Voices there get lost in the cacophony - like listening for a single raindrop in a deluge - but if you wait out the storm, it can be worth it. When they're not worried about girls or thinking about video games or stuffing their mouths with food, adolescent boys like A.J. can say some pretty profound things.

"You can't waste your time thinking about tomorrow," he said on Monday. "You have to live life today. If there's one thing Ican show people, it's that."

A.J. has cerebral palsy. He is in a constant battle for control of his muscles. Sometimes, he wins. A lot of times, he falls. One thing he has learned about getting up is it's easier if someone is there to help.

For many kids like A.J., that's what the Great American Bike Race does.

r r r

The race will turn 12 years old in April.

And for its birthday, it will be the one giving out presents.

That makes Beth Thune the happiest part-time accountant in town. She holds the purse strings for the bike race.

It is a purse without a bottom. Every dollar that comes in eventually finds its way back to North Dakota families who truly need it. Over the last dozen years, the Great American Bike Race has become one of the largest charity events in Bismarck-Mandan. Last year, 890 volunteer riders raised $180,000 for people with cerebral palsy. Since it started, the race has generated $650,000.

And, as chairwoman of the race's distribution committee, Thune got to help decide where it all went.

"It's the best committee ever,"she said. "We get to give all the money away."

In the weeks leading up to the annual race, riders go out and solicit donations from friends, family and local businesses. The money is spent on medical equipment for kids and adults with cerebral palsy who couldn't otherwise afford it.

Thune, director of rehabilitation services at Medcenter One, said the equipment - like leg braces or lift systems - is necessary for therapy or everyday living. But insurance companies often won't cover the full amount, creating a gap in coverage that patients' families can find difficult to surmount.

That's where the bike race rides in. If you have cerebral palsy, and you've been denied coverage for a piece of equipment your doctor says you should have, you can apply for money to make up the difference.

"These people aren't asking for the Cadillacs of equipment,"Thune said. "The money is for the basic activities of daily living. They tell us it changes their life."

r r r

"It is life-changing,"Dana Fleck said. "It's been a godsend for us."

Fleck's little boy, Cole, is growing into a big boy. He's 8 now, and needs a new pair of orthotics for his legs every six months or so.

That regularly leaves the family with a bill for a thousand dollars, even after insurance has done its part.

"It gets to be difficult on the family budget," Fleck said. "I think GABR is essential for us. When Cole was first diagnosed with the muscle disorder, one of our first concerns after his health was how we'll be able to provide for all his unique needs. We prayed about it, and the Lord led us to GABR and the good people there."

Funds from the bike race have paid for Cole's leg splints and a three-wheeled bike. He can take part in family bike rides now.

r r r

A.J. will probably never ride a bike.

It is hard enough for him to get from his wheelchair to his bed, and harder still to use his walker during his weekly physical therapy session at Medcenter One.

The bottom of his left shoe has a 2-inch lift on it, to counteract the extreme inward angle of his left leg. A plastic surgeon built a pocket inside A.J.'s abdomen, where doctors implanted a medicine pump. You can see the bulge under his shirt.

A.J. was born 10 weeks ahead of schedule, on May 1, 1993. He was diagnosed with cerebral palsy when he was 1. He moved in with his grandma, Barb Norby, when he was 3.

She watched him grow up. She watched him fall down. She watched him as, for a while, he slipped away from his peers.

"The kids were always good to him, but he couldn't keep up with them," Norby said.

A.J. kept to himself during recess. In the buzz of activity on the playground at Highland Acres Elementary School, A.J. was a fly on the wall.

Bruce Klootwyk saw him there, apart from all the other kids.

"It just looked like he was shutting out the world," he said.

Klootwyk's remedy?

Put A.J. on TV.

Klootwyk is race director for GABR. He has helped turn a 10-team, $10,000 event into a 100-team, $100,000 fundraising phenomenon.

Part of the recipe for success is exposure. Klootwyk finds kids to put on TVbefore and during the annual race.

Two years ago, A.J. was one of those kids.

The boy in the shell busted free.

"They came back to a live shot of the telecast of the race, and he just blurts out, 'Ihave cerebral palsy!'" Klootwyk said. "It was an affirmation that the race was his day, that it was all about him and the other kids. The Great American Bike Race has become a day when the world stops moving away from these kids who, frankly, can't keep up, and it turns around and comes right back to them. These kids get it."

A.J. got it.

The bike race and the team-learning concept at Horizon have helped him flourish, his grandma said.

"He is very outgoing," Norby said. "He has become a very good self-advocate."

A.J. said he likes talking to people about cerebral palsy. He recently spoke to a group of students at Century High School, where this year's race will be held.

"Iget to meet so many people," A.J. said. "Everyone thinks they know what's happening to them, that they're going to be around tomorrow. But there's no guarantee. You have to live for today, and spend time with the people you love."

r r r

Bismarck's mayor knows a thing or two about being in a race.

When it comes to GABR, he said, everyone wins. That's why it's so successful, that's why it's grown so much.

"It's so different from a lot of charitable events where you just cut a check," Mayor John Warford said. "At this one, you have to show up, you have to get on your bike and do some pretty hard work for a good cause. There's an individual challenge, a sacrifice, then you've got the team effort and the whole collective experience of all the teams in a room jam-packed full of energy. It makes for a really, really great event."

Medcenter One started the race in 1997.

It's the brainchild, really, of Dr. Kevin Murphy.

A physiatrist who works mostly with kids, Murphy saw the funding gap that needed to be bridged.

So he created a race - friendly or competitive, depending on the person - to serve as a fundraising tool. That first year, riders generated $10,154 for people with cerebral palsy. The number of riders and the amount they raised has grown every year since, up to last year's 89 teams and $180,000. Some of that comes from local businesses that pay sponsorships, but the event really has a wide reach in the community. More than 10,000 people contributed to GABR in 2007.

Murphy thinks the race could be even bigger.

"We've had visions that we thought the race could become much bigger even than it is right now," Murphy said. "It could certainly go statewide or nationwide. We hope we're still on a growing curve."

This year's race will be held in the CHS gym on April 12. A hundred teams of 10 riders each have signed up to take part.

Each member hops on the bike and rides as "far" as they can in 25 minutes. It is a contest, so Klootwyk and the other race organizers keep track of the miles logged by individuals and teams. The other part of the contest has a dollar sign in front of it. The teams and individuals who raise the most money also are acknowledged.

"It's a big undertaking, and there's more and more things to do every year,"Klootwyk said. "But it's really not until about 11 o'clock on race day - two hours into it - that I stop and I look around and Ithink, 'My God, look at what we've done: All these people, all this noise and commotion and all the money being raised.' Without the support of everyone involved, it wouldn't happen."

Klootwyk calls the Great American Bike Race a bottoms-up approach to fixing a problem "caused by the top-down command and control system of medical reimbursements."

In the end, he said, the race works because everyone wins. That, actually, is the slogan Medcenter chose to represent GABR: "Finally, a race where everyone wins."

"I believe we all have a 'giving' gene. In all of us, there is a desire to help in whatever way we can," Klootwyk said. "The bike race is a good example. It gives anybody who has a desire to help the opportunity to help," whether you're a competitive bike rider, a particularly adept fundraiser or just a friend who wants to do what you can.

Leave it to A.J. to sum it up best. He loves to sing, and likes to sing GABR's praises.

"I think it's a really great program because it helps so many people," he said. "If more people think about what more they can do, that benefits everyone."

(Reach reporter Tony Spilde at 250-8260 or tony.spilde.) @bismarcktribune.com