An advocate for arthritis
September 29, 2009
By Chantelle Lusebrink
10-year-old named honoree for fundraiser
She swims, she plays soccer and she snowboards. By all accounts, Alicia Seidel is like many other 10-year-olds in the area: There’s just one difference — she has arthritis.
“I’m the only one at my school with arthritis,” said Alicia, an Endeavour Elementary School student.
“A lot of people know about arthritis, but they think it is something you get when you’re old,” said her mother Cynthia Seidel, who was also recently diagnosed with an arthritic condition.
Alicia is one of 294,000 children living with arthritis in the country. But she hasn’t let it slow her down. In fact, because of her determination and her message for research and a cure, she was named the honoree for Bellevue’s second annual Arthritis Foundation Walk Oct. 10.“She was chosen because of her commitment to advocacy at such a young age,” said Julie Gabelein, marketing and public relations director of the Northwest chapter of the Arthritis Foundation. “She is well beyond her years. She understands and is able to communicate issues to adults and children, even at her young age.”
Alicia was diagnosed two days after her 8th birthday, Cynthia Seidel said.
“It came up fast,” Alicia said. “One day, I couldn’t walk and couldn’t hold a pencil in my hand.”
Her family physician quickly realized her condition required more expertise and referred her to Seattle Children’s, her mother said.
“We are really fortunate here to have Children’s Hospital where we have a rheumatoid department,” Cynthia Seidel said.
Though it was hard getting through all the doctor appointments, tests and medications, Alicia’s life today is completely normal, her mother said.
All those experiences, however, have led her to become one of the area’s leading advocates for juvenile and adult arthritis awareness movements.
In fact, she has lobbied on behalf of children with arthritis in Washington, D.C., at the 2009 Arthritis Advocacy Kids Summit. There, she spoke with several representatives, including U.S. Rep. Dave Reichert and Senators Patty Murray and Maria Cantwell, about a bill that would provide $1.9 billion to increase research of arthritis at the National Institutes of Health; $23 million for the Centers for Disease Control to initiate new programs; and a loan for the 10 states without pediatric rheumatoid specialists to hire them.
“Because of her participation we made great strides,” Gabelein said.
“It makes me feel good to make a difference,” Alicia said. “It is a positive way to look at having arthritis, but to still help raise awareness and help other kids with it, too.”
“She is a quiet-spoken person, but she is very considerate of those around her,” Alicia’s former teacher Lorre Mark said. “For being so shy, she overcame that fear and really was comfortable educating classmates and people around her about rheumatoid arthritis.”
Mark said she believes Alicia’s trip to Washington, D.C., helped her go from being shy to the advocate she is today.
“I think speaking for others and realizing that it’s not just her, but that her voice can really help other people, has helped her grow,” she said.
The U.S. House of Representatives passed the bill before the end of the 2008 Congressional Session, but because of the financial crisis last fall, it never reached a vote in the Senate, Cynthia Seidel said.
“So, we have to start again,” she added, but it will be worth the fight.
“As a parent, after the shock, you think there is going to be a clear health plan for your child and that you’ll be able to make it better, but there just isn’t a lot of information and resources,” Cynthia Seidel said. “That is what this bill will help with.”
But before beginning lobbying work for the next session, Alicia is looking forward to seeing her friends and the community turnout to walk or run either the one- or three-mile event.
After all, she’s spent a year brainstorming ideas and planning it with other committee members.
This year’s theme is ’80s, so she’s really looking forward to the costume contest and the freeze dance competition, she said.
“It’s going to be a really fun event, so everyone should come,” she said.
There are even raffle prizes this year and a station to decorate your own bangle bracelets, she added.
All of the proceeds from the walk support the local chapter and national organization for the Arthritis Foundation.
If you go
Bellevue Arthritis Walk
9 a.m. Oct. 10
Bellevue City Hall Plaza
450 110th Ave. N.E.