MORENO VALLEY: Teen is spokesman for arthritis

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MORENO VALLEY: Teen is spokesman for arthritis

http://www.pe.com/localnews/stories/PE_News_Local_D_wanthony24.28758b5.html

10:00 PM PST on Wednesday, February 23, 2011

Norma Urena used to think of arthritis as an old person's disease.

Now she knows that 300,000 children in the U.S. have it, too.

One of them is her 14-year-old son, Urena.

It took a sprained ankle that failed to heal before Urena was

diagnosed about three years ago with a rare form of juvenile arthritis.

will be among a few hundred advocating for more resources to fight

the disease.

He's leaving Friday for Washington, D.C., to attend an Advocacy Summit with

345 people from 47 states who have the disease, 85 of them children.

During the three-day conference, and others will share their stories

with congressmen to persuade lawmakers that more public policy and funding

are needed to find a cure for the nation's No. 1 cause of disability that

costs the economy more than $128 million a year.

said he's " nervous but happy " about his upcoming experience.

His mother said at times he couldn't get out of bed or walk.

" He never whines or complains, " said Norma, 37. " When he says, 'Mom, my

knees are hurting, I know he's really in pain.' "

's young life changed three years ago after a sprained ankle didn't

seem to heal. One year and seven doctors later, a specialist at Kaiser

Hospital in Fontana diagnosed the boy as having ankylosing spondylitis. It's

a chronic form of arthritis that causes inflammation of the joints between

the spinal bones, neck, hips and pelvis and can lead to eventual fusion of

the spine.

" It's scary, " said. " I want to get into my 30s without a hip

replacement. "

He injects himself daily with Enbrel, a medication to treat autoimmune

disease. That, he takes in stride. The worst part was giving up his beloved

sports, especially baseball and football and leaving Mountain View Middle

School for an independent study course at home. He hopes to start Valley

View High School in the fall.

" He was my wild child, always getting stitches or staples, running into

things, " recalls Norma. " Now he has to carry around hand sanitizer and avoid

public places like Chuck E. Cheese. He was afraid he'd be the bubble boy,

like a nerd. "

At first, didn't want anyone to know he was different. But he's made

friends with kids like himself at the Painted Turtle, a special-needs camp

in Lake where he hopes to become a counselor.

" I baby him, " admits Norma. His family doesn't: not brother Arthur Jr., 17;

live-in cousin Mark, 19; sister Araceli, 19; or her boyfriend,

Harney, 18. " He's still , " they tell Norma.

His sickness has drawn everyone closer together, she said. Araceli's senior

project at Valley View High last year focused on her brother and juvenile

arthritis.

As " 's Team, " the Urena family will participate in the Inland Empire

Arthritis Walk on April 30 at the Promenade Shops at Dos Lagos to fight a

disease that afflicts some 50 million people. " ran the three miles

last year, " Norma said.

no longer can play sports, but he and his dad, Arthur, a truck

driver, are enthusiastic Dodger fans.

The two also spend hours together restoring vintage bikes. In his bedroom,

proudly shows off the fruits of their labor, a cobalt-blue

Dodger-themed Schwinn low-rider.