Sammamish's Seidel family battles juvenile rheumatoid arthritis — at home and afar

What a difference a year can make.

That cliché essentially sums up what Sammamish 9-year-old Alicia Seidel and her family have been through since last August, when she was diagnosed with juvenile rheumatoid arthritis.

An estimated 46 million Americans have some type of arthritis, 294,000 of whom are kids with juvenile rheumatoid arthritis, lupus or scleroderma, according to the Arthritis Foundation. On Oct. 11 the foundation will host the first-ever Bellevue Arthritis Walk, with registration starting at 9 a.m. Alicia will be walking, along with friends and family. Her team has raised more than $1,500, and has a goal of $2,500. Alicia has held several lemonade stands to raise money, and sewn bags for sale to support the cause.

When she returns next week as a fourth-grader at Endeavor Elementary, it will be with essentially no physical restrictions. It took about nine months for specialists to get her mix of mediations fine-tuned.

Alicia has even been taking gymnastics lately, something that she would not have even been able to consider last August, when symptoms for the chronic illness made a sudden appearance and worsened rapidly.

Her dad, Artur, was away on a business trip. Her mother, Cynthia, decided to take Alicia and her two sisters, Melena, now 7, and Olivia, now 5, on a girls’ day to the mall. They had a portrait taken of the four of them as a surprise for Artur, then went out to eat. Alicia was feeling good at the beginning of that day but had been sick with a fever the week before, and during the course of that meal the pain and stiffness developed to such a severe point that she couldn’t walk and they had to wheel her to the car in Olivia’s stroller, Cynthia said.

Because they had already been to the pediatrician twice in the past week for the fever, Cynthia took Alicia straight to Swedish Medical Center. Tests were done, but the next morning they went back to Alicia’s pediatrician, who sent them to Children’s Hospital & Regional Medical Center.

“It took three weeks from that point on to get the diagnosis,” Cynthia said. That’s relatively quick, she said, as many families don’t find out what their child has for nearly a year. “We are so fortunate here to have pediatric specialists in rheumatoid arthritis.”

Damage that is done before a diagnosis is made is irreversible, which is why it’s key to get patients to a specialist quickly, she said.

Alicia underwent a rigorous battery of tests, checking for everything from lime disease to rheumatic fever to a bone marrow test for cancer, done under general anesthesia.

“Arthritis — especially in kiddos — is a diagnosis of exclusion,” Cynthia said.

Asked whether she was feeling nervous during that time or confident that the doctors would be able to help, Alicia replied, “It was sort of both. I knew that they would figure it out, but they didn’t know yet, so it was sort of scary.”

Artur cut his business trip short, and when he returned he was shocked at the drastic change he saw in his daughter.

“Literally I had to lift her out of the car,” he said, commenting on the extreme pain and lack of mobility Alicia was experiencing. “That was the hardest part for me.”

Throughout the testing, doctors had Alicia’s parents give her Motrin every four hours to try to help control the inflammation in her joints that was causing the fever.

Once the diagnosis was made, Cynthia and Artur had to be trained how to give Alicia injections for certain types of medication.

There were days when she couldn’t hold a pencil, and initially, the family set up a temporary bedroom for Alicia in the living room, because she couldn’t navigate the stairs.

She’s now on Methotrexate, a drug that suppresses her immune system so that her body doesn’t attack her joints. She takes about seven other supplements and medications as well.

Amazingly, during all that the family went through, Alicia only missed 17 days of school last year, Cynthia said.

By May, when the medications were finally tweaked to just the right combination and dosage, it was a huge relief for the Seidels.

“I was really excited because it meant I could spend more time in the day out playing and having play dates,” Alicia said.

In addition to helping Cynthia and others on the organizing committee for the Bellevue Arthritis Walk, Alicia also went with her mom recently to Congressman Dave Reichert’s office on Mercer Island, where the two met with a staff member and asked that Reichert support the Arthritis Prevention, Control and Cure Act. Among other things, the bill would help people get diagnosed earlier, help use federal funding in a more strategic manner and try to address the country’s shortage of pediatric rheumatologists.

“Essentially, if this bill doesn’t get passed before this election, we’ll be back to ground zero,” Cynthia said.

For more information about the Arthritis Walk, visit arthritiswalkbellevue.kintera.org or, for more about Alicia’s team, click on “Alicia Seidel” in the righthand box called “Top Fundraisers.”

• Civil
• Smart
• On-topic
• Free from profanity

We ask that all participants own their words by registering for an account. It's a simple process that will take seconds and helps keep our comments free of trolls, cranks, and drive-by commenters.

As a community site, we ask that the community help by using the "Flag" button on each comment if they feel the comment has violated the rules. You can also use the up and down arrows on each comment to voice your opinion about that particular comment.

Want to tell us something but you don't want it to be public? Talk to us privately.