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  • Kaylee Westbrook, 9, writes down her thoughts on having Juvenile Arthritis on a magic erase board in the playroom of her Tarboro home. Despite suffering from Juvenile Arthritis, she enjoys a variety of activities, including drawing, singing, dancing, swimming, and playing softball.

    Kaylee Writing.jpg

  • Kaylee Westbrook and her older sister , not pictured, created the artwork pictured here in the playroom of her Tarboro home.

    Kaylee & Board.jpg
July 9, 2012

A typical girl

‘It might not look like I’m sick, but I am’

Staff Writer MIRANDA BAINES

TARBORO — At first glance, Kaylee Westbrook seems like a typical 9-year-old girl.  But Westbrook has a condition that makes her different from other children — Juvenile Arthritis (JA).

“It might not look like I’m sick, but I am,” Westbrook wrote in magic marker on a board in her playroom. “Some days my arthritis is so bad that I can’t move.”

For a child with a disability, Westbrook lives an active lifestyle. She has taken karate lessons, tap and ballet. She plays softball and enjoys swimming. But when things are “out of sorts,” as her mother, Karen Dew, says, Westbrook can’t participate in normal activities.

“When she’s not flaring, she’s like any other kids. When she is flaring, we have to set limits,” Dew. When asked how she feels about having Juvenile Arthritis, Westbrook gave an optimistic response, explaining that she gets to do things normal kids don’t get to do, like going to Victory Camp Junction, a camp for children with disabilities, and going to National Juvenile Arthritis conferences and meeting new friends. Westbrook proudly displayed a photo of herself standing beside NASCAR driver Todd Peck at last year’s National JA conference. She recounted memories of horseback riding, archery and swimming at Victory Camp Junction.

Dew was not surprised by her daughter’s response, saying that she always looks on the bright side of things. Despite her chipper attitude, Westbrook gets upset when other children at school pick on her because of having to use crutches when she has problems with her ankles swelling.

“Kids say that I don’t have arthritis and I’m just faking,” said Westbrook. But Westbrook’s condition is very real. Her arthritis affects her knees, wrists and ankles, as well as her eyes. Her eye inflammation makes her sensitive to light.

“I have to wear sunglasses all the time,” said Westbrook. In addition to wearing sunglasses and using crutches whenever her arthritis flares up, the 9-year-old has to take Celebrex and folic acid daily and go to Duke Medical Center every four weeks to receive infusions of Orencia, a biologic drug used to treat JA. Westbrook also takes painkillers such as Tylenol on a regular basis.

“She’s in pain to some extent every day. She has a very high pain tolerance,” said Dew. Most likely, her daughter does not remember a time without the pain of arthritis. She was diagnosed with JA at the age of 2 after her knee swelled up to “the size of a softball,” according to her mother.

“When she was a baby, she crawled on her hands and her feet. She rarely used her knees,” said Dew. JA is an autoimmune disease, unlike the type of arthritis that affect older people, which is degenerative, Dew explained. Approximately 294,000 children nationwide have some form of pediatric arthritis or rheumatologic condition, according a fact sheet from the Arthritis Foundation. It is one of the most common childhood diseases in the United States.  Westbrook has juvenile idiopathic arthritis, meaning it affects more than five of her joints. No known cause of JA has been identified and there is no cure. The odds are that Westbrook will have to live with JA for the rest of her life.

Despite all Westbrook’s challenges associated with JA, she says she just wants “to be treated like a normal kid.” In spite of having knee problems on Wednesday afternoon, Westbrook begged her mother to go swimming.

Westbrook and her mother plan to attend the National JA Conference once again this year, July 19-22, in St. Louis. (July is Juvenile Arthritis awareness month).

“It’s about the only time she gets to interact with other kids with Juvenile Arthritis,” said Dew.

 

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