Young lives grapple with enduring pain

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Young lives grapple with enduring pain

http://www.signonsandiego.com/news/metro/20080515-9999-1sz15walk.html

UNION-TRIBUNE

May 15, 2008

CHULA VISTA - Her voice is so soft and small it can nearly be drowned out by

a faint breeze rustling through Memorial Park in Chula Vista.

" I want to be a normal kid, " said Clarisa Gomez, 9, when asked about her

dreams for the future.

For Clarisa, that's a big dream, and one cluttered with far too many

obstacles for such a young girl.

Two years ago, Clarisa was diagnosed with systemic juvenile rheumatoid

arthritis. Each day begins at 6 a.m. with an injection to help ease the pain

and inflammation in her joints.

For Clarisa, every meal includes a dose of folic acid to help her body

counteract the harsh side effects of the injected medications, preventing

painful mouth sores that typically result, so that she can eat.

And before Clarisa started the daily injections at home, there were weekly

visits to the hospital for chemotherapy, a cancer treatment also used for

juvenile rheumatoid arthritis.

Still, sometimes, despite the attempts to combat the arthritis, the pain can

be so severe that Clarisa can't bear to press down on a tube of toothpaste.

On other days, she is in too much pain to move from her bed to go to the

bathroom.

Clarisa and Kailey Berry, also of Chula Vista, are being honored Saturday at

the Arthritis Foundation's sixth fundraising walk in San Diego. The theme

for this year's walk, where about 1,000 are expected, is " The Year of the

Young Hero. "

DETAILS

Arthritis Walk

When: Saturday, at 8:30 a.m.

Where: Embarcadero Marina Park North, downtown San Diego

Registration: (858) 492-1090, ext. 114; online at www.arthritis-sandiego.

org/walk; or beginning at 7 a.m. the day of the walk

Theme: The Year of the Young Hero

Honorees: Clarisa Gomez and Kailey Berry of Chula Vista, Annie Farhood of

Rancho Santa Fe and Connor Brown of Rancho San Diego.

The disease has impacted Clarisa's growth. She is only 44 inches tall - or

about as tall as a 4-year-old.

Despite the mountain of obstacles before her, Clarisa's biggest fear is not

the arthritis or the daily injections that sting. She fears missing school -

or her first Communion.

" She doesn't feel pity for herself or her situation, " said Clarisa's aunt,

Norma Solis. " Sometimes, when we know she is in pain, she will say, 'Yes,

but it's only in my arm. I have the rest of my body, so it's OK.' "

When she is in pain, Clarisa asks her mother to call her elementary school

to have a wheelchair waiting for her, rather than Clarisa staying home.

Like Clarisa, Kailey also has big dreams for the future. And she, too, must

navigate those dreams around the realities of living with juvenile

arthritis.

Diagnosed when she was a year old, Kailey has undergone cortisone shots in

her knees and wrists, new drug trials and intravenous infusions. Still, she

regularly suffers from pain.

" Sometimes I wake up in the middle of the night and I'm in pain, so I have

to get a heating pad and put it around my leg and knee, " said Kailey,

looking down at her hands as she talked, twirling the silver and white

bracelets on her wrist.

AdvertisementKailey's role model is country singer Underwood of

" American Idol " fame. And with Kailey's penchant for acting, voice lessons

and guitar playing, dreams of life in the spotlight don't seem far-fetched.

Sometimes though, Kailey's fingers hurt during guitar lessons, forcing her

to stop playing. And despite doctors telling the family she would outgrow

the disease by the time she was 5, Kailey still suffers four years later.

But she's working hard not to let anything hold her back.

" I'm proud of her. She's a trouper, " said her mother, Sue Berry.

Juvenile rheumatoid arthritis affects 50,000 children nationwide. There is

no cure. Some children grow out of it, going into a sort of remission. Those

who don't will have to find manageable treatment as adults.

" There's been great strides through research within the last 12 to 15

years, " said Veronice Braun, president of the San Diego chapter of the

Arthritis Foundation. " There's now medication that can stop the progression

of the disease, which is significant because a child who is diagnosed with

JRA - it affects their growth and their joints and their bones, so it does

hinder the healthy development of children.

" But this is still a disease they live with. It's chronic. They have good

days and bad days. "

The goal of the Arthritis Foundation's annual walk is raising money for

research, programs, services and particu larly for medical fellowships.

There is a shortage of pediatric rheumatologists nationwide, Braun said. T

here are only two such doctors in San Diego County. Part of the money raised

from walks is used for fellowships aimed at getting doctors interested in

the field.

" It's not as sexy a profession. It's not like being a surgeon, " Braun said.

" Pediatric rheumatologists pretty much run tests and diagnose. "