Chasia and George Bailey of Sequim with their 5-year-old son, Patrick, who was recently diagnosed with systemic juvenile idiopathic arthritis. (Jesse Major/Peninsula Daily News)

Sequim boy struggles with rare disease; parents strive to raise awareness

SEQUIM — When a 5-year-old Sequim boy complained of arm pain in September, his parents chalked it up to growing pains.

About a week later, they realized something was actually wrong. It took longer for a diagnosis.

Patrick Bailey was diagnosed Oct. 31 with systemic juvenile idiopathic arthritis (sJIA), a condition that affects about 10 percent of children with juvenile idiopathic arthritis, said Chasia Bailey, his mother.

A child has a better chance of getting cancer than sJIA, doctors told her.

It’s an autoinflammatory disease that causes inflammation of joints, causing them to become red, swollen, painful or hot to the touch and more widespread inflammation of the body, according to The Hospital for Sick Children, affiliated with the University of Toronto.

While arthritis is in the name, the condition is nothing like what people think of as arthritis, Bailey said.

“I wish they could take the arthritis part out of the name because people read that and think, ‘Oh, it’s just arthritis,’” she said.

“It’s not just swollen hands, swollen knees. There’s a lot going on inside where at any moment, he could go back to the hospital or it could kill him.”

Bailey, a medical assistant at Olympic Medical Center, hadn’t heard of the condition until doctors in Seattle told her that her son had it.

Now she wants to raise awareness about it so others can catch it earlier on.

It all started with shoulder pain, she said. When the pain didn’t go away, she knew it was time for him to see a doctor.

Doctors told her that her son had synovitis and that all he needed was ibuprofen and he’d be fine in a week. The ibuprofen didn’t work and he started having spiking fevers.

In early October, Patrick Bailey woke up in the middle of the night screaming and crying because his left hip hurt. That’s when his mother looked for help off the Olympic Peninsula.

“Nobody could tell me what was wrong with him,” she said.

With no answers locally, she took her son to Seattle Children’s Hospital’s emergency room.

It only took minutes for doctors to suggest an emergency surgery for what they thought was a septic hip, she said.

The surgery, which typically takes about half an hour, lasted more than two hours. Doctors found 71,000 white blood cells on Patrick’s left hip, which is an extremely high number, Bailey said.

After he was diagnosed on Halloween with sJIA, things seemed to be going well, she said, but doctors have since said his timeline for remission has moved.

“We have to control it and hope he goes into remission,” she said, wiping away tears.

“I just know that kids in my mom’s group, some of their kids have died from it because it affects their bodies differently.”

Patrick is on a host of medications, taking at least four different types a day. He has $16,000 in monthly injections. Among his medications are steroids taken twice daily.

Until recently, he traveled to Seattle at least once a week for infusions, appointments and tests, but now the family is trying to have the infusions done locally at OMC.

Bailey said it’s the first time OMC’s short-stay unit has done pediatric infusions and that it’s been a learning process for everyone.

The situation has been a struggle emotionally for everyone, said George Bailey, Patrick’s father.

Both of Patrick’s parents said co-workers have been extremely supportive.

“I got a guy there, he asks me every day, ‘How’s your boy doing?’” said George, who works at Air Flo Heating Co.

What also helps is just seeing his boy smile, he said.

Patrick has been having difficulty with anxiety since treatment started.

He was athletic before treatment started but can now hardly recognize himself in the mirror, his mother said.

“He’s more shy because he tells me he looks different,” she said. “People stare at him and they don’t know what is wrong with him.”

For now, the family is taking everything day by day, with hopes he’ll improve.

“He has to be one year symptom-free and off medication before they consider him in remission,” she said. “And we’ve got a long road for that.”

The family has a GoFundMe account to help with medical bills at www.gofundme.com/little-patricks-medical-fund.

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Reporter Jesse Major can be reached at 360-452-2345, ext. 56250, or at [email protected].

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