At first blush, Lindsey and Ashley Valenti look like typical preteenage girls.
They enjoy doing typical preteen things: Going to Disney theme parks, attending birthday parties and playing.
But doing even these simple things is difficult for the Wesley Chapel girls, as they both suffer from juvenile arthritis.
Still, they keep an upbeat attitude, which their mom, Mary Valenti, said is probably one of the reasons they’ve been chosen as the child honorees for Tampa’s Arthritis Foundation Jingle Bell Run/Walk. The event is set for Dec. 21 at the Dale Mabry campus of Hillsborough County Community College. Besides a 5-kilometer and one-mile run, there also will be activities for kids, a silent auction and awards.
Valenti is pleased that her daughters were selected for the honor because she thinks it’s important to spread the word about juvenile arthritis, a condition she believes is often misunderstood. Both girls — who also require a monthly infusion of antibodies because of an immune system condition called specific antibody deficiency — were diagnosed in 2010, but Valenti suspects that they had the condition much longer.
Lindsey, 12, said she began noticing problems with her knees about two years before she was diagnosed with juvenile arthritis. She was taking a dance class and one part of a routine required dancers to spring up from the floor.
“All of the girls were able to get off the floor with ease,” Lindsey said. All except for her. She had to push herself up.
When Valenti reported that Lindsey’s knees were swollen, it was explained away as “growing pains,” she said. Lindsey had back pain, which doctors said could be kidney infection. She had severe fatigue that was chalked up to her immune system condition.
“It took us a very long time to come to this diagnosis,” Valenti said.
But it didn’t take as long to recognize Ashley’s condition, her mom said. When Ashley complained that her foot hurt, they initially thought she had turned her ankle.
When that wasn’t the problem, Valenti wondered if Ashley also might have juvenile arthritis. A rheumatologist confirmed her suspicion.
Many people have never even heard of juvenile arthritis, Valenti said. Often, they trivialize the condition, saying things like their grandmother or grandfather has arthritis.
“They don’t get it. They don’t understand it. This is a life-altering diagnosis,” Valenti said. “They look so normal and healthy, that’s why we have trouble getting across to people how serious this is.”
The arthritis they have is aggressive and lifelong. It affects organs. It affects their heart. It causes blindness.
“These are things we constantly having to get checked,” she said. “We have a team of about seven specialists.”
Lindsey remembers that recently she saw her neighbors playing outside.
“We used to be out there with them, and now we can’t,” she said. “It hurts to run. We’d go and play tag. We live in a lot of pain.”
When Lindsey wakes up in the morning, she has at least an hour of stiffness “with every joint, my neck, my knees, everything.”
The arthritis has prompted Lindsey to be home-schooled, taking classes through Florida Virtual School. But it can be hard, because Lindsey is at an age where having a social life is important. Being out of sight means being out of mind, she said, noting she doesn’t attend many birthday parties because she’s not invited.
“I have a wheelchair that I use off and on during flares, and sometimes I think kids are almost scared of what to say, so I’m avoided,” Lindsey said. “Ashley will go and play with the Barbies and she’ll need help getting up. And, I’ll sit down on the floor, and I’m pulling on the chair to try to get myself up. Even getting up from a chair is sometimes hard.”
Ashley attends Wesley Chapel Elementary School, but is frequently out of school to attend doctor’s appointments and get treatments.
Valenti and her husband Tony try to keep things as normal as possible for her girls. When Ashley’s school had a Halloween parade, for instance, Valenti pushed her daughter around in a wheelchair so Ashley could take part.
“She’s fifth grade, it’s her last one. We’re fighting to make it memorable for her because fifth grade is a big deal,” Valenti said. “I don’t know how much more schooling she’s going to be able to attend. We have some decisions to make for next year. We’re probably going to have to do the virtual school as well. But it’s a tough choice. She’s a very social kid.”
Besides robbing her children of their childhood, the disease has posed challenges for the entire family, Valenti said, especially when it comes to finances. There’s the cost of medical treatment, doctor visits and medication. There’s also the cost of just driving the girls to their medical appointments, which include trips to St. Petersburg and Gainesville.
“We bought a brand new car in May just because we travel so much, and I already have 12,000 miles on it,” Valenti said.
They’ve formed a fundraising team they call the Valient Valentis, and they’ve had some local events to raise money to help battle arthritis. They’re determined to do what they can to help their daughters and others who suffer from juvenile arthritis.
WHAT: Jingle Bell Run/Walk
WHO: Tampa Bay Arthritis Foundation
WHEN: Dec. 21, with registration beginning at 7:30 a.m.
WHERE: Dale Mabry campus of Hillsborough Community College, 4001 W. Tampa Bay Blvd.