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Posted at 11:03 a.m., Monday, July 2, 2007

Lanai girl, 9, represents Hawaii at arthritis conference

By CLAUDINE SAN NICOLAS
The Maui News

LANAI CITY — With her arthritis 98 percent in remission, 9-year-old Jasmin "Jazz" Otto goes about her life "just like everybody else."

The Lanai 3rd-grader swims, plays baseball and basketball, and is learning how to ride a horse.

"She does anything anyone else does," said Jazz's father, Scott Otto, a journeyman lineman for Maui Electric Co. in Lanai City.

This past weekend and through the Fourth of July holiday, Jazz is representing Hawaii at the 2007 National Juvenile Arthritis Conference in Hershey, Pa. Each year, the Arthritis Foundation holds a conference to offer educational presentations and activities to meet the specific needs and ages of those attending. The 2007 conference theme, "Success is Sweet," plays on the Hershey, Pa., location, which is renowned for its chocolate company and theme park.

"It sounds like a lot of fun," Jazz said in an interview just prior to her trip.

The Hawaii Building Industry Labor Association and the Weinberg Friends program in partnership with other sponsoring groups help provide financial support for Arthritis Foundation children's programs in Hawaii. The Hawaii Branch of the Arthritis Foundation is sponsoring the trip, covering airfare, conference fees and lodging for Jazz, whose father is accompanying her to the conference.

"I want to promote awareness of arthritis," Jazz said.

As the 2007 Hawaii Statewide Arthritis Walk honoree, Jazz hopes to do a televised public service announcement to tell others about the disease not often associated with children.

In fact, more children are diagnosed with juvenile arthritis than juvenile diabetes, cystic fibrosis, cerebral palsy and muscular dystrophy combined. Arthritis, according to the Arthritis Foundation, is the No. 1 cause of work disability in the nation and costs Americans more than $86.2 billion annually. Arthritis afflicts approximately one in four people.

Scott Otto said he and his wife, Ginger, were shocked to learn of their daughter's diagnosis about seven years ago.

"Just like everyone, we didn't know children could get arthritis," he said.

Jazz was diagnosed at the age of 21 months with polyarticular juvenile rheumatoid arthritis. She had been living a healthy, normal life and was already walking at a year old.

The first signs of trouble surfaced when the family was living in Oregon and Jazz had a swollen knee. Initially, doctors thought it was a bacterial infection and talked about the possibility of a leg amputation at the knee.

The diagnosis of arthritis came up shortly after a few more tests were done on Jazz.

"To me, it was like a cancer diagnosis," Scott Otto recalled.

Ginger Otto immediately did research on the Internet about the disease and possible treatments. She learned there was no cure for arthritis and discovered that in children's cases many of them become deformed or crippled and need to use a wheelchair.

At some of her lowest points, Jazz was barely able to walk, with her right knee being the most affected, along with both ankles, elbows, hips, fingers, wrists and jaw. Scott Otto said her "worst years" for pain and other symptoms were when she was 5 and 7 years old.

In 2001, the Ottos moved from the Mainland to Lanai City. Jazz started to respond positively to medication and has fought off most, if not all, the symptoms of arthritis.

She takes 300 milligrams of ibuprofen every day and is subjected to a shot of methotrexate (a chemotherapy drug) once a week.

There are times when Jazz feels a little bit of pain in her knee and other parts of her body.

"Sometimes it hurts, and when it gets like that I just tough it out," she said.

"Jasmin's been really lucky," Ginger Otto said.

The Ottos said they want to help other families, like those who've helped them during past arthritis conferences, to learn how to live with the disease.

"Jasmin is an inspiration," said Susan Milton, senior program director for the Hawaii branch of the Arthritis Foundation. "Her whole family has rallied to support her and the Arthritis Foundation."

Jazz has three sisters, 16-year-old Loral who lives on the Mainland; and Malia, 13, and Lilly, 3, who live with her and their parents in Lanai City. Ginger Otto has her own home day-care business and does landscaping as well.

Milton said she hopes that Jazz and Scott Otto will bring back information from the conference to share with other families here.

The mission of the Arthritis Foundation is to improve lives through leadership in the prevention, control and cure of arthritis and related diseases. For more information, call (800) 462-0743 or visit www.arthritis.org.

For more Maui news, visit The Maui News.