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Jingle Bell Run/Walk for juvenile arthritis sufferers

BRADENTON -- Ask Sami Knight what she’d like for Christmas and her face lights up.

“A Barbie doll,” the Sarasota 7-year-old said.

Ask Sami what she truly wants more than anything else, though, and she might say something that would move anyone to tears.

It would be to have her pain go away.

Sami suffers from juvenile arthritis.

Diagnosed with an arthritic knee at age 4, she now has arthritis in 23 joints.

“It hurts to see what she goes through,” said Matt Knight, her father. “She fights through it every day.”

Sami’s courage will be made manifest 7 p.m. Friday at the 16th annual Jingle Bell Run/Walk for Arthritis on Lakewood Main Street in Lakewood Ranch. She’ll be in her purple wheelchair, joining her family and more than 2,000 participants in the event.

It will have already been a long day for her.

Some are longer than others.

“It takes her a good 45 minutes to get out of bed in the morning,” said Lana Knight, her mother. “Most kids pop right out of bed.

“Every three weeks she sits at All Children’s Hospital to get a six-hour IV infusion. She gets horrible shots every week and gobs of pills every day.

“There’s not a day goes by she’s not in pain.”

Her father feels it especially because he was a gifted athlete and Sami’s arthritis limits her activities, such as Girl Scouts and dance.

“She’s stronger than I’ve ever been in my life,” Matt Knight said.

Sami isn’t alone in her fight.

Her family has been steadfast throughout the ordeal and proactive with the Arthritis Foundation/Florida Chapter.

“Without their support, we wouldn’t be able to do it,” Sami’s mother said. “So we help whatever we can.”

Friends, classmates, coworkers and neighbors joined the Knights in forming “Team Chicken,” a formidable fundraiser for the Jingle Bell Run/Walk.

They were No. 1 with $10,000 in 2009, raised $3,500 in 2010 and have raised $6,000 so far this year.

“They’re on track to be the No. 1 fundraising team again,” said Anne Fair Forrest, the Arthritis Foundation president/chief executive officer.

It’s not just about Sami, either.

Arthritis affects nearly 22 million Americans, including 5 million Floridians, and is the No. 1 cause of disability in the United States.

“I have my daughter and 300,000 other little friends who have it, as well,” Lana Knight said. “So to find a cure for her and them and the adults is something to which we’ve devoted ourselves.”

Thanks to the foundation, the Knights have attended the Arthritis Foundation Advocacy & Kids Summit in Washington the past three summers -- and also spoken on Capitol Hill on behalf of their cause.

“Sami’s able to connect with other kids who have arthritis and we get to meet with other rheumatologists and parents and learn so much more,” her mother said. “The experience has been amazing.”

Beginning with Friday night, that’s what the Knights want for their daughter at the holidays.

“We try to do Christmas as big as possible at our house,” the mother said. “Sami deserves it.”

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