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Sunday, May 27, 2018
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Wesley Chapel sisters named honorees for run

WESLEY CHAPEL — It was while Tony and Mary Valenti’s daughters were in dance class that their mother noticed troubling signs.

“They would be in pain and exhausted after dancing,” she said. “Way more than I thought was normal.”

A medical diagnosis confirmed Valenti’s fears were more than just the overwrought imagination of a concerned parent. Lindsey, 12, and Ashley, 11, have juvenile arthritis, an affliction that has led to endless doctor visits, hospital stays and missed school days during the past 18 months.

It’s a disease they will struggle with the remainder of their lives and that already hampers their social interactions and their formerly active lifestyles.

“They accept things,” Valenti said. “They start to realize their path is not the same as everyone else’s.”

The latest turn in that path comes with a bit of recognition. Lindsey and Ashley have been named the child honorees for the Arthritis Foundation’s Jingle Bell Run/Walk that will be held Dec. 21 in Tampa at Hillsborough Community College’s Dale Mabry campus, 4001 W. Tampa Bay Blvd. Participants can choose a 5k or a 1-mile run and walk as they help raise money for the foundation.

Lindsey and Ashley will be there, leading their team known as the Valiant Valentis and participating in wheelchairs because they can’t walk such a long distance.

More information about the Jingle Bell Run/Walk is available at www.JBRtampa.kintera.org.

Arthritis can destroy joints, bones, muscles, cartilage and other connective tissues, hampering or halting physical movement, according to the Arthritis Foundation. Juvenile arthritis is an umbrella term used to describe many autoimmune and inflammatory conditions that can develop in children age 16 and younger.

The cause is unknown, though some research points to a genetic predisposition, according to the foundation.

Mary Valenti said she also has been diagnosed with arthritis.

The condition dominates the lives of the two girls. They deal with constant pain and a rigorous medicine schedule that requires them to take about eight to 10 pills a day. They also get routine injections and twice a month they visit All Children’s Hospital in St. Petersburg for drug infusions.

They have medical appointments of some sort several times a week.

“We really make the rounds,” Valenti said.

Adjustments had to be made with schooling. Last year, Lindsey was a sixth-grader at Long Middle, but now as a seventh-grader she stays home and takes classes online.

Ashley, a fifth-grader at Wesley Chapel Elementary, splits her time. Some days she is able to go to the school, but at times a teacher must come to her through the school district’s home-bound education program.

“I miss a lot of school,” Ashley said. “When my friends invite me to birthday parties, a lot of times I can’t go because I’m not feeling well or I need to go to the doctor’s office.

“Mostly the kids in my class are nice to me. But also kids think I’m faking it and I want to be in the spotlight.”

The specific type of arthritis that afflicts the girls can cause vertebrae in the spine to fuse together and also can lead to blindness, among other problems, Mary Valenti said.

“People don’t even realize kids get arthritis,” she said.

The condition isn’t evident by looking at the girls, which causes them additional trouble at times. When the family uses a disabled pass for parking, people sometimes make rude comments, Mary Valenti said. At Disney World, people accuse them of using wheelchairs just to get to the front of lines.

“It definitely makes it a little difficult,” the mother said.

Despite the challenges they face, the girls manage to have fun. They get together with a group of families with children who also have arthritis. They attended a summer camp in Eustis called Camp Boggy Creek, which serves seriously ill children.

They also like to read. Both are Harry Potter fans and Ashley also likes “The Babysitters Club” series.

Lindsey enjoys “The Hunger Games” and other futuristic teen fiction. A recent favorite book, though, is more realistic and relevant.

“The Fault in Our Stars” by John Green tells the story of a 16-year-old girl who attends a support group for young people with cancer.

Lindsey could relate.

“A lot of the medicine, I know what she was talking about,” Lindsey said. “It’s nice to read books like that.”

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