Girl, 9, spreads awareness of juvenile arthritis

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INDIANAPOLIS (AP) — The crippling pain of arthritis made it difficult to roll out of bed.

Bending over required a hand on the wall. Even grasping a toothbrush was impossible.

Arthritis had rendered the start of every day a nightmare for 7-year-old Brooke Wilkerson.

"All the sudden, she can't get up, she can't buckle her pants, she can't brush her teeth. It happened so fast," Danny Wilkerson, Brooke's father, told the Daily Journal (http://bit.ly/1gaMqFg ).

For more than a year, Brooke has been working to overcome a rare form of arthritis that strikes children. With medication, she is able to control it and the damage that it does to her body.

She will be sharing her story this year as an honoree at the annual Indy Walk to Cure Arthritis, in the hope of letting people know that the disease doesn't just affect the elderly.

"You just have to be brave. I'm able to be brave because I know God is with me," she said.

Now 9 years old, Brooke has been treated so she can still do the activities of a normal child. Most days, she can run, jump and swing on the playground. A third-grader at Greenwood Christian Academy, she loves art and drawing animals.

But in mornings, sometimes her parents will find her crawling to the bathroom. It's the only way she can move.

"She's a lot better, but she still struggles," Danny Wilkerson said.

Brooke was diagnosed with polyarticular juvenile idiopathic arthritis in 2012.

The disease, which strikes children younger than 16, had caused 34 of her joints to become rigid and painful to bend.

If she needed something in the morning, Brooke had to yell to her parents for help. It was too painful to get up herself.

Tracy Wilkerson, Brooke's mother, had to carry her to the bathtub for a hot bath then help her stand and get her arms and legs moving.

"In just six weeks, the arthritis had already spread from her knees to all of her joints," Tracy Wilkerson said.

It started when one morning when Brooke complained that her knees hurt.

The pain only lasted about 10 minutes, so her parents disregarded it. Then it happened again the next day and the day after that.

"I told her it was growing pains, since after a few minutes she was fine. But it kept coming back," Tracy Wilkerson said.

After 10 days of the mysterious morning pain, Brooke started having trouble walking. She would wobble and seem to have no strength to walk.

"She would get up and take a few steps, but she just couldn't do it," Danny Wilkerson said.

One of Brooke's classmates also had been diagnosed with juvenile arthritis. Since Tracy Wilkerson had spoken to that girl's mother in the weeks before, she suggested to doctors that it might be the cause.

But their pediatrician told them that the chances of it being arthritis were low, that she was too young even for juvenile arthritis.

The family consulted a variety of specialists, including sports medicine doctors and orthopedic surgeons. X-rays, blood work and other tests did not reveal any specific disease.

Everyone was perplexed.

"Part of the problem was that all of these appointments were in the afternoon, and Brooke's problems were all in the morning," Tracy Wilkerson said. "By the afternoon, she was doing everything that her doctors wanted her to."

The family tried to make an appointment at Riley Hospital for Children at Indiana University Health to see a rheumatologist, or specialist in arthritis and other autoimmune conditions. But insurance wouldn't cover the appointment without a referral, and none of the other specialists would give a referral.

On behalf of the family, the mother of Brooke's friend with arthritis asked a rheumatology nurse to call the Wilkersons. After hearing what was happening, they were given a referral.

"She felt like it was something to be concerned about with arthritis, so we could get an appointment," Tracy Wilkerson said. "When we saw a rheumatologist, he immediately knew."

A thorough examination revealed that every single joint in her body was affected by arthritis.

To help control the disease, Brooke was given steroids to help strengthen her body. Methotrexate, a drug used in chemotherapy, prevents her immune system from attacking the joint tissue.

"They wanted to get steroids going right away, so there wouldn't be any joint damage," Danny Wilkerson said.

The medication has made a difference. Brooke can get up on her own now, though she does still have problems with stiffness in the mornings.

She has to get a shot of methotrexate every week and takes medicine at home. A heating blanket helps loosen up her stiff joints before she gets out of bed. A strict diet of organic and natural foods also has helped.

The family also has relied on a community of arthritis sufferers for support.

After the diagnosis, the Wilkersons became active with the Arthritis Foundation, a nonprofit group working to prevent, control and cure the disease. The family took part in last year's Indianapolis Walk to Cure Arthritis, the foundation's annual fundraiser. Brooke formed a team, Brooke's Brigade, and they raised more than $5,000.

This year, organizers asked her to be the youth honoree.

"A lot of people don't know that kids get arthritis too. Often, it's misdiagnosed by pediatricians, who see the swelling and think it's a sprain," said Tammy Sander, director of special events for the Arthritis Foundation in Indiana. "Brooke can help us share story that kids can get arthritis."

With the recognition, Brooke has been asked to share her story with other juvenile arthritis patients. Her message to them is to stay strong and keep fighting.

The Wilkersons hope their situation raises awareness that arthritis can strike children.

"In our situation, we were blessed because we knew someone who had juvenile arthritis, and we knew what to look for. There are several children who never get diagnosed for years, which can lead to permanent damage," Tracy Wilkerson said.

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Information from: Daily Journal, http://www.dailyjournal.net

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