SAN DIEGO –
Her voice is so soft and small it can nearly be drowned out by a faint breeze.
“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. 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.
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, both residents 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.”
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.
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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 starting at 7 a.m. the day of the walk
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“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,” Braun said.
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. 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.' ”
Mia Taylor is a freelance writer based in San Diego.
