December 2006
Jingle Bell Honoree Doesn’t Let
Juvenile Arthritis Rule Her Life
Sadie Jordan, 9, is this year’s Honoree for the Arthritis Foundation, Pacific Northwest Chapter’s Jingle Bell Run & Walk. She puts a human face on arthritis, which can strike children as well as adults.
When Sadie was 18 months old, she stopped walking. Since the Edmonds toddler could not talk in full sentences to tell her parents what was wrong, they were puzzled by the unexpected change in her walking skills. Sadie’s mother, Theresa Jordan, noticed that her daughter’s right ankle was swollen, and her parents thought she must have twisted or injured it when they were not looking. They took Sadie to her pediatrician, who examined the ankle and assured them it would probably heal in a few days. But a few days turned into weeks, and Sadie continued to avoid walking. Over the next four months, the Jordans took their daughter to eight different doctors, including an orthopedic specialist, but found no answers.
“It was so frustrating to go from doctor to doctor
and not have any reason for what was wrong,” remembers Theresa Jordan.
“One doctor even told me that it was a behavioral issue, and that
she just wanted attention. But as a mom, I just knew there was something
else that was wrong. She was just lying around, and she was not playing.
She was so little, and she didn’t have her voice yet, so I had to
speak for her,” she remembers.
Sadie’s parents finally took her to a new pediatrician recommended
by a family member. The doctor remembered learning about Juvenile Rheumatoid
Arthritis (JRA) in medical school. The Jordans were referred to a rheumatologist,
and Sadie was diagnosed with pauciarticular (few joints) JRA when she
was 22 months old. This diagnosis meant Sadie had fewer than four joints
affected by rheumatoid arthritis.
Over the next six years, Sadie had what her mother calls her “active times” and her “quiet times” with JRA. “She was able to play soccer and baseball – which she loves – during the quiet times,” Jordan remembers. But in the summer of 2005, Sadie’s arthritis took a turn for the worse. “She was experiencing pain everywhere, and she was tired and weepy all the time.”
Doctors at Children’s Hospital upgraded Sadie’s diagnosis to polyarticular JRA, meaning the arthritis now affects many joints in her body. In the past year, doctors at Children’s have increased and changed Sadie’s medications many times, trying oral medicines, steroid injections into her joints and even intravenously-infused medication to help fight the inflammation that attacks the healthy cells in her joints.
Throughout Sadie’s diagnosis and treatment, she continues to be a vibrant and happy little girl. She just celebrated her 9th birthday, and says some of her favorite things are reading books about magical adventures, riding her bicycle, coloring pictures and going to the park to swing. She participates in the Arthritis Foundation’s Kids and Teens Get Arthritis Too (KAT) group where she has connected with other kids with arthritis and made new friends.
Being chosen as this year’s Jingle Bell Run &
Walk honoree is giving Sadie a lot of confidence. “It has really
brought her out of her shell,” says Jordan. “She’s finding
her voice now. She knows she has something different, and she’s
realizing we all have something different, and she’s not alone.”
Sadie and her family want to serve as an example to other children with
JRA, a disease that is often misdiagnosed or overlooked in children. They
want people to know that rheumatoid arthritis affects kids as well as
adults, and JRA is not as uncommon as many may think.
“One child in 1,000 will develop arthritis or some form of a related
disease,” says Helen Emery, M.D., professor of pediatrics and chief
of pediatric rheumatology at Children’s Hospital in Seattle.
Most children who have JRA will have it first show up as joint pain, swelling,
and stiffness when they wake up in the morning. Parents and doctors may
have a hard time realizing the problem in very young children, since they
may not complain about it. Local medical research has found that it takes
an average of 10 months from the onset of symptoms for a child to be accurately
diagnosed and begin treatment for JRA.
Emery says another problem with diagnosing the disease in children is
that the blood test used to diagnose rheumatoid arthritis in adults often
comes back negative in children. A pediatric rheumatologist usually makes
the diagnosis based on the child’s history and a physical exam.
As for Sadie’s family, it is not enough for them
to sit back and quietly wait for a cure. They are taking an active role
with the Arthritis Foundation by participating in the Jingle Bell Run
& Walk and talking about Sadie’s disease openly. This is helping
them to understand Sadie’s diagnosis, to get support from friends
and family, and to help other families by raising awareness.
Jordan’s advice for other parents is, “If your child is really
fatigued, has a loss of appetite, stops playing like they used to, and
is always sore; don’t accept that is just growing pains. Have a
voice and be an advocate for your child until they get the correct diagnosis.”
JRA is something Sadie has learned to live with. It has not stopped her from being a typical 9-year-old. In fact, it has given her strengths she may not have possessed had she not had the disease. She has an intense love, kindness and empathy for all living things. Sadie says she wants “to be a doggie day care person” when she grows up because she has a special fondness for animals.
She also has a special ability to sense other people’s sadness or pain, and has compassion for them. “I haven’t met a kid with JRA that didn’t have a special intuition about the people around them who are hurting,” says Jordan. “They know what it’s like to live with pain, and they understand that not every day is an easy day.”
Katie Amodei is a Lynnwood-based freelance reporter, mother and stepmother.
Jingle Bell Run & Walk
The Jingle Bell Run & Walk is an annual fundraiser to benefit the Arthritis Foundation Pacific Northwest Chapter. Funds raised provide funding for research, programs and services to prevent, control and cure arthritis and related diseases for more than 2.2 million people living with arthritis in the Pacific Northwest.
The event consists of a 5K run, 5K walk and 1K children’s Run with the Elves, as well as a costume contest, prizes and entertainment.
When: Sunday, Dec. 10. 1K Run with the Elves begins at 8:20 a.m. and 5K runs and walks begin at 8:50 a.m.
Where: Westlake Center, Pine Street and 5th Avenue, downtown Seattle.
Registration: Call or visit Web site for advance registration. Day of race registration begins at 6:45 a.m. on the second floor of Westlake Center.
Information: visit www.seattlejinglebellrun.org or call 206-547-2707.
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