Sacramento boy with muscular dystrophy makes national power soccer team

07/31/2013 12:00 AM

07/31/2013 12:00 PM

Jake Bath plays power soccer. He is a kind person, and he's funny and outgoing.

This is how the 13-year-old Sacramento boy describes himself, after giving much thought to the first things people should know about him.

There was no mention of his drawing skills or his enthusiasm for classic cars in this simple self-profile. Jake left out that he's a big brother and a rising seventh-grader and that he has a calm demeanor.

Though he gets around in a power wheelchair and his muscles are progressively weakening, he also left "Jake has Duchenne muscular dystrophy" off the top of his list.

Jake is an athlete first, and he is taking his skills to Paris in October to compete in a tournament as a member of the USA Under-18 Power Soccer Team.

"When I play, it gets my adrenaline up, and I feel like I'm in the zone," he said. "There's lots of cheering, but for me, it's quiet because I'm in the game. I watch where the ball is going to go, and I know I can't get too close to the other teammates."

Power soccer is usually played on an indoor basketball court. Teams pit four against four, with each team made up of a goalie, a center and two wing players. Players bump an oversized soccer ball against foot guards attached to their power wheelchairs. They try to avoid defenders, maintain control of the ball, support teammates and zip down the court to score.

The game first arrived in the United States in 1988 from Canada, when the Bay Area Outreach and Recreation Program brought power soccer to Berkeley. Players come to the court with a range of disabilities, but anyone who can control a power wheelchair can play the game.

For now, Jake's muscle deterioration has restricted only his ability to walk. He can point to the ball, turn his head to watch where he's going in a backward drill and prop his feet up on the foot guard as he cheers on teammates from the sideline.

"He's able to transfer from the wheelchair to the couch with help," Jake's mother, Danielle Bath said. "He needs help with bathing. He can feed himself, but over time he will lose arm strength, and over time he will lose all of his muscle strength. But as long as he can move two fingers on the joystick, he can play power soccer."

Duchenne muscular dystrophy is caused by a mutation in the gene that makes dystrophin, a protein that helps hold muscles together, according to the Muscular Dystrophy Association.

Heart and breathing complications become fatal as muscles weaken. While the disorder previously claimed lives in the teenage years, advances in medical technology have brought some people with the disorder into their 30s.

The genetic nature of the mutation explains why one year after Jake's diagnosis, his brother Colin, now 6, was also diagnosed with the same disorder. It primarily affects boys, and Jake's 9-year-old sister, Emma, does not have the mutation.

When Jake was younger, Danielle Bath said, he kept up with his friends in preschool and didn't seem different from other children.

But late in 2007, he began showing the classic signs of his disorder, such as trouble climbing stairs and standing up from the floor and stiffness when he ran.

"We're not a competitive family, so when he didn't do well at soccer, I thought, 'He's like me, he just doesn't do well with sports,' " Danielle Bath said.

Jake was diagnosed when he was 8 years old. The symptoms progressed, and his muscles weakened. He started using a scooter to get around, and he used a wheelchair for the first time when he tried power soccer two years ago.

Jake now uses a power wheelchair full time. The Bath family affectionately refers to Jake's chair as "Frankenchair" because of its modifications. With the upcoming international adventure, the Bath family will replace the piecemeal chair with one designed specifically for power soccer to help Jake stay competitive.

Danielle Bath said Jake handles his disability well, though she added that 13 can be a difficult age for anyone. There are added challenges in Jake's case, but as a mom she struggled most to build the courage to tell her son that his disorder is life-threatening.

"It was a confirming moment for him and for me," she said. "We both know we can speak about it and talk about it and cry about it. It's all out in the open."

Though she told Jake no one ever really knows how long they have left, Danielle Bath keeps her tightknit family together.

Every Saturday the Baths drive from Sacramento to Berkeley for Jake's practices and scrimmages as part of the Bay Area Outreach and Recreation Program power soccer team.

On July 1, Jake Bath got the news that he would join the national team. He'd practiced, made an audition video and given an interview.

He's added three practices a week to his schedule since then, doing drills at Sacramento's Midtown YMCA to prepare for October's international tournament. Danielle Bath rolls the ball down the court, chases after it when Jake kicks it with his foot guard and marks his progress on a clipboard.

Emma and Colin Bath hang out in the gym, watch the practice or play their own games. Danielle Bath says Colin is still too young to be interested in the sport.

In practice and in games, Danielle Bath has seen Jake's laid-back, go-with-the-flow attitude morph into a leadership role. She believes the game has changed him.

"When he plays power soccer, he's a completely different kid," Danielle Bath said. "He's free out there, and he doesn't need help from anyone. The decisions he makes are his own and the outcomes are his own. He comes alive, and he's more vested in the moment."

She credits Jake's coach with some of the transformation.

Chris Finn is in charge of three Berkeley teams – the Bombers, the Earthquakes and the Crushers. Jake plays for the Crushers, which Finn described as a team for younger, developing players.

Finn also coaches the USA National Power Soccer Team and the USA Under-18 Power Soccer Team.

He said he chose Jake because of his eye for the game and his talent for watching other players and knowing what the next play is.

"The other thing I really like, he looks like he's having fun like a kid while he's doing all these great things."

Jake's dad, Travis Bath, is an assistant coach for the Crushers. He's a rugby player, and Danielle Bath said thinking their son couldn't play sports was hard on him when Jake was diagnosed.

"All of those hopes and dreams die with this kind of diagnosis, and you have to learn this new world," she said. "To see him excel in an activity outside of school, especially for my husband, we got that dream back.

"I'm a soccer mom now."

Call The Bee's Morgan Searles, (916) 321-1102. Follow her in Twitter @morgansearles.

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