A seventh-grader stays positive in the grip of unrelenting pain

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A seventh-grader stays positive in the grip of unrelenting pain

Saturday, November 18, 2006

The Oregonian

http://www.oregonlive.com/news/oregonian/index.ssf?/base/news/116364211575180.xm\

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Sharing: The best gift would be a new hip and knee

SHANIQUA WARREN sizes up her pain first thing in the morning.

On a good day, she can concentrate on seventh-grade classes at Vernon School

in Northeast Portland. On a bad day, she struggles with the few steps from

her motorized scooter to the passenger seat of her mom's 1999 Toyota

Corolla.

" Sometimes, when I'm tired in the morning, I'm tired until lunchtime, "

Shaniqua says softly. " Or if I'm hurting in the morning, I can tell I'm

going to be kind of down. "

At 12, she has coped for more than half her life with juvenile rheumatoid

arthritis, a rare childhood form of the disease that makes joints swollen

and stiff. In severe cases, like Shaniqua's, patients need assistance with

basic tasks such as getting dressed and cooking.

Shaniqua's troubled health and positive outlook exemplify the spirit of

Season of Sharing, a 75-year-old tradition that connects people in need with

Oregonian readers who want to make a difference.

Shaniqua stays as healthy as possible by taking medicine and working with

physical therapists once a week at Portland Shriners Hospital for Children.

Other days, she relaxes her joints in the soaking pool at McMenamins Kennedy

School, an amenity arranged through her nearby school.

Her mom, , laughingly says her own skin is " like a prune " from

all the time she and Shaniqua spend in the tub.

As a single mom, has kept up with bills by working in the warehouse

of a hydraulic cylinder manufacturer for the past 13 years. But she can't

afford extras such as a hospital-style bed and a specialized lounge chair

that would make Shaniqua more comfortable.

And she's struggling to save for a down payment on a single-story home that

Shaniqua could navigate. For now, they live with 's mom in the Alberta

neighborhood.

Whatever it takes to help her only child, says, she'll do it. She

sometimes phones Shaniqua at school during her lunch break to say, " I love

you. " They're the best of friends.

" I call her my angel, " says. " She's a pretty strong girl. "

Shaniqua, who has a bright smile and neatly braided hair, likes to sing,

take photographs and draw. She sketches clothing designs and hopes to learn

how to sew them. And, someday, she'd like to go to art school.

Creative projects take Shaniqua's mind off the constant pain, her mom says.

And they provide a much-deserved break for a kid who learns so much about

her health, she takes notes to keep track of it all.

Shaniqua's weekly therapy sessions take grit and often leave her exhausted.

In the Shriners pool on a recent Tuesday afternoon, she winces and yelps

when longtime therapist Kirsten Zilke extends her leg underwater.

" The pulling is good for it, " Zilke says gently. " It gets the joint

lubrication going, like the Tin Man. "

" Oh, " Shaniqua replies, staying focused.

Zilke tries to lighten the mood. " We watched that the other night. "

" What, 'The Wizard of Oz' ? " Shaniqua asks, perking up.

For a few minutes, she becomes a bubbly kid again. She says she recently saw

" The Grudge 2 " with a friend, and insists horror movies don't scare her.

Talk turns to Halloween, and then to Christmas. Zilke asks what presents

Shaniqua wants this year.

" A new hip and knee, " she says without hesitation.

Shaniqua and her mom are considering hip replacement surgery, which would

require a long recovery. Doctors say the operation could help Shaniqua's

mobility, but they don't expect her to function normally as an adult.

As sees it, hope is the best medicine for her daughter.

" I try to think positive, " she says. " I tell her, 'One day, we're going to

be walking side by side.' "