For the third consecutive year, Ian Hochstetler raced in the Arthritis Foundation’s Jingle Bell Run on Dec. 15 to raise funds and awareness to help kids just like him suffering from juvenile arthritis. It’s a tradition he wouldn’t miss; he’s dedicated to jingling all the way to a cure.
“It means so much to me because I really want to be able to help other kids,” said Ian, 15. “I know how it feels to suffer without medicine from juvenile arthritis, and it’s debilitating.”
He’s working hard to do his part to make a difference in the lives of the nearly 300,000 children who face the daily challenges of the autoimmune disorder. This year, Ian was nominated as the event’s youth honoree, where he had an opportunity to share his story of hope and offer a heartfelt thanks to all his supporters.
“I was fortunate enough to get medicine fast that worked for me,” Ian said. “So, I don’t have much pain day to day. I’m healthy enough to play sports. I feel so lucky, but there are many other kids that have the exact opposite case. They can barely walk, and they still aren’t getting access to medicine. I hope to spread the word about how many are affected in hopes of giving more and more kids access to the help they need.”
Ian’s battle with juvenile arthritis
When Ian entered his adolescent years, he started complaining about pain in his knees and ankles. At the time, Ian was involved in a travel soccer team, so his parents assumed he was sore from playing hard and needed ice and rest.
But soon, it got to the point where Ian’s pain was happening several days a week, and he’d need multiple days to recover from play. He even stopped growing and putting on weight.
Then, in the summer of 2017, Ian suffered his first major flare-up, where he experienced extreme swelling and pain in his ankles, knees and hip joints all at once.
“That evening, he crawled into our bedroom because he couldn’t walk and was crying in pain,” said Derrick Hochstetler, Ian’s dad. “We iced it and gave him medicine to help reduce the inflammation. But after a week of seemingly no relief, we knew it was more than being sore from rough play.”
Derrick and his wife took Ian to their family doctor, who diagnosed him with a sprained ankle. Feeling concerned his pain was more than a sprain, the family got a second opinion, which led them to the referral to Akron Children’s Hospital.
Ian underwent several tests, including testing for some cancers, but finally got a diagnosis of juvenile arthritis 2 months later.
“It was a very scary time for our family, and Ian was very overwhelmed,” said Derrick. “But once we knew what we were facing, we could start to build a treatment plan to get him better. Akron Children’s gave us valuable resources to help educate ourselves. It definitely helped us move forward with a positive mindset.”
Ian underwent physical therapy and medication to reduce the swelling and manage his pain. At first, Ian’s dosage was constantly changing due to his rapid development. Today, Ian gets one shot per week, takes pain management medication and vitamin supplements to relieve pain and swelling, maintain full movement and strength, and prevent complications.
Every 2 months, Ian sees Nancy Delnay, a pediatric nurse practitioner in Akron Children’s Department of Rheumatology, for follow-up and blood work. His vision is also monitored for preventative measures. Recently, Ian was diagnosed with scoliosis, a complication from juvenile arthritis, and is currently wearing a brace to keep his spine from bending any more.
But, life does not stop for Ian because of juvenile arthritis. He participates in dock jumping competitions with his 2 dogs, Tyson and Ralph. And though he had to quit soccer because it was hard on his joints, Ian keeps busy as an active, competitive member of his high school’s swim team. He practices with his team every day, and during his first high-school swim meet, he’s thrilled to report he broke all of his best times from last year.
“After a really active day, Ian knows the next day will be a day to recoup,” said Derrick. “On bad days, Ian will do a lot of extra stretching to warm up his joints, but on good days, he’s no different than any other child.”
Juvenile arthritis isn’t holding Ian back. In fact, it’s quite the opposite. He’s out there raising awareness and funds every chance he gets to help other kids with similar stories.
In addition to the Jingle Bell Run, Ian’s participated in several other fundraisers, and has been invited to speak and share his story for other Arthritis Foundation events. He’s also met with state representatives to share his story in hopes of influencing long-term insurance coverage for individuals with juvenile arthritis and other chronic conditions.
“People need to hear about juvenile arthritis because it’s rare,” said Derrick. “People think it’s like what your grandma has and it’s nothing like that. It’s a healing process for us, too, when we go to events and talk with other families that don’t understand it.
“Ian is caring and has a big heart; he’s always thinking about others,” continued Derrick. “That is why he’s my hero. I’m very proud of him. He’s an amazing kid — so he must take after his mother.”
Annual Jingle Bell Run
Ian’s Reindeer Racers has been the event’s top fundraiser in the last 3 years he’s participated since being diagnosed in 2017. This year, his team surpassed its $4,000 goal with more than $6,000 — the most they’ve raised to date. Since 2017, Ian’s team has raised more than $15,000 for the Arthritis Foundation.