Tess Perkinson is a 7-year-old missing her two front teeth. Doing cartwheels is one of her favorite things.
Hava Collins is a 14-year-old girl with a soft-spoken but confident demeanor who is proud of her recent accomplishments as a ballet dancer.
They are not the faces most would conjure up when they think about arthritis, but Tess and Hava are indeed the faces of the upcoming Walk to Cure Arthritis, an event that will raise funds for a cure for that debilitating disease. Tess and Hava are the Youth Honoree and Youth Chair, respectively, for the walk. Both have Juvenile Idiopathic Arthritis, a form of the disease that affects children.
The one-mile walk will be April 30, starting at the Imperial Center at 4309 Emperor Boulevard in Durham.
Finding a cure for Juvenile Idiopathic Arthritis is a particular concern because of the impact it has on children and their families, according to Candice C. Fuller, executive director for the Triangle/Coastal Office of the Arthritis Foundation, which is organizing the Walk to Cure Arthritis.
“There are quite a number of kids who have this disease – an estimated 8,400 kids in North Carolina – but you spread people out all over the state a lot of times the kids and their families won’t know anyone else,” Fuller explained. “They feel isolated and they feel weird, because the stereotype is that arthritis is an old-person’s disease. People find it hard to believe that someone who happens to have arthritis is young.”
That has been true with Hava, who was first diagnosed with Juvenile Idiopathic Arthritis at age 5. “People say, ‘What? You can’t have arthritis – that’s for old people,” she said.
Hava, who lives in Cary with her mother Shoshana, father Pablo and siblings Jacob, 11, and Lilah, 8, seems like any normal teenager now. With the help of medical care at Duke Children’s Hospital, Hava is in remission. But the disease was debilitating from about age 5 to age 10.
“That was when I really couldn’t do anything active,” Hava recalled. “When all my friends were playing around, I had to sit out.”
“That was a very difficult time for her,” her mother, Shoshona Collins, said. “We ended up pulling her out of school and homeschooling her so she wouldn’t be exposed to other diseases. … She wanted to do ballet for years but she couldn’t do ballet. We had to pull her out.”
After six years of care and medication, Hava became healthy enough to take up ballet again. She started out with girls a lot younger than her, but she has caught up and joined a class with girls her age.
“I recently got put up en pointe, and that was really hard,” Hava said. She explained that her ballet teacher initially told her she could not dance en pointe because she was wearing a knee brace at the time. The technique involves balancing all of ones weight on extended toes; it is not for beginners.
“Everyone else [went en pointe] in October, November and December, but I went on in January,” Hava said. The delay does not seem to bother her at all.
A cure is important even though medication can control it, Fuller said. Hava has permanent joint damage. “She may have to have joint replacement surgery down the road,” her mother said. “They wait until you’re fully grown to address that.”
Another problem is that controlling Juvenile Idiopathic Arthritis requires a variety of medication, some with debilitating effects. Tess first began noticing the effects of the disease two years ago, when she was 5. She was diagnosed in June.
One medication, methotrexate, causes severe nausea. “One weekend she threw up most of the night…,” her mother, Ashley Perkinson, said.
“I threw up seven times,” Tess contributed.
Tess also needs to take anti-nausea medicine and anti-inflammatory medicine. Her parents wait until Friday before giving her shots to avoid interfering with school. They wait until she’s asleep to give her the shots because they hurt.
But the medications are, at least, effective. Tess had “very limited mobility” before getting on medication, and at one point had leg pain that so bad that she wanted a wheelchair. Today, Tess, who lives in Raleigh with her mom, father Sterling and sister Margot, 6, is an active kid.
She takes piano, knitting and tennis lessons. “At the last [medical] appointment, they gave her clearance to do cartwheels, which was off limits before,” her mother said.
About those cartwheels: Tess does them outside or inside the house. Ask her why she does cartwheels, and she shrugs; she does not seem to have thought much about why.
Tess and Hava are helping to persuade people to participate in the walk or donate to the Arthritis Foundation through letters organizers are circulating, personal pitches on social media and other means. The organization hopes to get 700 participants in the walk and their fund-raising goal is $117,000, Fuller said.
Said Hava: “This is really important to me and it would really mean a lot to me if you could come, and if you can’t you can donate, and even $5 would make a difference.”
For more information about the Triangle Walk to Cure Arthritis, visit www.walktocurearthritis.org/triangle