When a painfully swollen finger caused Benny Naftzger to step back from the starting pitcher’s position before a baseball playoff game in July, his mother, Cindy Naftzger, knew the situation was serious.
When a painfully swollen finger caused Benny Naftzger to step back from the starting pitcher’s position before a baseball playoff game in July, his mother, Cindy Naftzger, knew the situation was serious.
The tests their doctor ordered came back normal.
“After that, his toe started swelling,” Cindy recalled in a recent interview.
Benny limped to his first appointment with Dr. Roberto Borgia, a rheumatologist at University Hospitals Rainbow Babies and Children’s Hospital in Cleveland, where a follow-up appointment was made for two weeks later.
“Between appointments, his condition got much worse,” Cindy said. “He woke up one morning and couldn’t walk.”
Every finger and toe was swollen and painful and soon, his whole left side was affected, his father, Cody, recalled.
“The doctor told us he’d never had a patient come back to him in a wheelchair,” Cindy said.
Benny was diagnosed with enthesitis-related juvenile idiopathic arthritis, a rare form of juvenile arthritis that involves joint pain and stiffness, characterized by both arthritis and inflammation at the point where a ligament, tendon or joint capsule attaches to the bone, according to the Genetic and Rare Disease Information Center’s website.
Over the last three months, Benny spent one week at UHRBCH to get his treatment started, with some degree of success, and has been back and forth to the hospital for follow-up treatments, his mom said.
By last week, Benny was walking again, the swelling and pain temporarily alleviated by steroids.
“It’s been a good month,” Cody said, adding Benny still needs a lot of help and is in and out of classes at Cardinal Elementary School in Middlefield Village.
He’s on a special curriculum to accommodate his illness, his father said.
“(JIA) is not a well-known disease,” Cindy said. “People just don’t understand how aggressive his condition has been.”
Cindy and Cody want more awareness and research on JIA.
“Our main hope in sharing this story is to raise awareness for children battling JIA,” she said. “So many people don’t realize that kids can get arthritis, too — and that it’s so much more than ‘just joint pain.’ It’s an autoimmune disease that affects the entire body, and yet, there’s still not enough understanding or research focused on children living with it. We want people to know it’s real, it’s serious and it deserves more attention.”
Nearly 300,000 children in the U.S. are affected by juvenile arthritis, according to the Arthritis Foundation. GARD reports only 50,000 children have enthesitis-related juvenile idiopathic arthritis.
However, because it’s an “invisible illness,” it often goes unnoticed or misunderstood, Cindy said.
“This journey has shown us how strong Benny is. Benny continues to smile and push through and that’s why we’ll keep advocating — until more people understand and more research is done for kids like him,” Cindy said.
The cause of Benny’s illness is a mystery, his mother said.
“It could have started from something like strep or it could be genetic or from an infection,” she said. “It’s surprising how many things out there can cause it.”
Sitting on their living room couch Oct. 23 with Benny and Cody, Cindy said the next step is for Benny to receive injections of a low-dose chemo drug she will be giving him weekly that should kill off the cells attacking his system.
“Then, we hope his body will produce healthy cells,” she said. “If the injections don’t work, we have to go to biologics.”
The Arthritis Foundation website described biologics as powerful drugs that may slow or stop inflammation that can damage joints and organs in arthritis and other inflammatory diseases.
“There’s no cure for JIA or any arthritis,” Cindy said. “We can only manage the symptoms. He’s on tons of other medications, as well. This affects his liver and tendons and eyes and organs. He got it all.”
Cindy is an administrative assistant for Middlefield Village and Cody was recently sworn in as a Middlefield police officer. They expect to pay about $6,500 out-of-pocket to cover his medical costs and insurance will cover some of the expenses, they said.
“The deductible is high, but it’s manageable,” she said.
To help with the costs, the family is holding a fundraiser – Hoops for Benny – from 10 a.m. to 3 p.m. Nov. 22 at Cardinal Elementary School, 16175 Almeda Dr., Middlefield.
Benny’s basketball coach, Ryan Sloan, and Benny’s grandfather, Brian Lew, are organizing the three-on-three basketball tournament.
Teams with players 13 years old and over will pay $100 to play. The cost for teams ages 12 and under will be $50, according to the fundraiser flyer.
A Chinese auction and a 50/50 raffle are planned with lunch costing $10 for diners 13 years and up and $5 for ages 12 and under. Teams will receive free meals.
Teams can register for the three-on-three basketball tournament by calling 330-814-9612. Basket donation for the raffle can be made by calling 330-814-9612 or 330-646-1449, or donations may be left at the Good News office, 14907 N. State Ave., Middlefield Village.
For more information about JIA or to learn how to support ongoing research, visit arthritis.org.
