SOLON — 5k and one-mile runs at the Solon Recreation and Nature Area (SRNA) aren’t new, however a new run is making its debut Saturday, October 8 for a very special group of kids, including at least three from within the Solon community.
The first ever Bone Dash 5k and Monster Mile will start at 10:00 a.m. at the Timber Dome Lodge. While the Monster Mile will loop around the SRNA the 5k will follow the trail out toward Ely Road. All proceeds are to benefit the brand new Joining Hands Pediatric Rheumatology Support Group at the University of Iowa’s Stead Family Children’s Hospital.
Courtney Kremer, a Pediatric Nurse Practitioner in the Pediatric Rheumatology Department explained there has been a need for a support group for some time now. “Our patients have been asking for ways to connect with other families and kids who are going through some of the same diseases and treatments that they’re going through. We knew there was this need, and we’ve set one up; and it is the first one in Iowa, that I’ve heard about.” The pandemic has led to issues with arthritis and rheumatology networking, she said. “They’ve kind-of fizzled out, so that support for the families has been lacking.”
While some childhood diseases get a lot of publicity, such as yearly radiothons for pediatric leukemia, or childhood type 1 diabetes, pediatric rheumatology doesn’t often land in the spotlight.
Pediatric Rheumatology, she explained, consists of a variety of autoimmune diseases including juvenile arthritis, Lupus, scleroderma (a group of diseases, which lead to a hardening and tightening of the skin and connective tissues due to the body producing an overabundance of collagen), dermatomyositis (muscle inflammation), vasculitis (inflammation of the blood vessels), and autoinflammatory syndromes including periodic fever syndromes and chronic non-infectious osteomyelitis; a bone infection.
“The biggest population we see is juvenile idiopathic (without a known cause) arthritis, and that’s nearly 300,000 kids in the US. That’s more than type 1 diabetes, and more prevalent than childhood leukemia, so its actually a lot more common than people maybe realize. We want to bring awareness to that.”
Arthritis is generally considered to be a condition exclusively for older adults, but Courtney points out it very much can and does afflict a large number of kids too. “Kids can get swollen joints and other diseases that we treat that can affect any organ in the body; the skin, the lungs, the kidneys, so there’s a lot more to pediatric rheumatology than people may realize.”
Emma Leisinger, Research Coordinator in the Pediatric Rheumatology Clinic, is the co-organizer with Courtney for the Bone Dash. “We noticed there was a need for a support group to be started in our clinic for the kids, and we pitched it to our division, and they said it was a good idea so we started working on it.” The support group, she said, provides an environment for kids and their families to connect. “They have similar diseases so they can help each other socially and emotionally walk alongside each other. They go through a lot of things other kids their age don’t have to, so its good to have a support group.”
“Our goal for the support group is to have at least two events per year for the families to get together, but preferably we’ll have quarterly events. Maybe a fundraiser event like this to keep the support group going, but also some networking events and educational events where we can bring people in to provide education to the parents while the children can connect and play and do crafts and other activities to just meet each other and make friends so they can know they’re not in this alone,” Courtney added.
Nine year old Willow O’Sullivan is one of the Solon kids affected by one of these disorders, specifically polyarticular juvenile idiopathic arthritis, a condition affecting her joints. Willow’s mom, Amanda, said she was diagnosed in 2020.
“We’ve always had short stature in our family but she just wasn’t growing, she was in the .01 percentile for height, and every time I would hold her hand to cross the street, or clip her toenails, or hold her hand at all she’d say, ‘Mom it hurts,’ and I wasn’t even holding her that tight.” Willow would also complain of joint pain, and her fingers started looking different. “I have arthritis throughout my family so I referred her through the Stead’s Family Children’s Hospital (Amanda is a Doctor of Chiropractic, or DC).” There, numerous tests were ran leading to the diagnosis.
Treatment, Courtney said, focuses on “calming down the immune system” and utilizes immunosuppressant drugs to bring the arthritis under control. In other words, there isn’t a cure, per se, but rather the treatment attempts to manage the symptoms. “Usually our patients do very well and our goal is that once they’re treated appropriately they’ll be able to function like any other child, and you would never know they had juvenile arthritis or whatever other condition they may suffer from.”
Willow is able to do most of the things other kids do, she’ll ride a bike, dance, even wrestle. But, Amanda noted, she has to be careful of certain environments where she could easily contract an infection. What might be a simple case of flu-like symptoms for a normal child could land her in the hospital in serious condition (due to suppression of her immune system).
James Cecil is another Solon youth afflicted. He’s 15 and was diagnosed at the age of nine. Initially it was thought he was suffering from strep throat, his mom Liz said. “That’s how it presented for him. He had a high fever, sore throat, just didn’t feel well. We went to the doctor thinking it was no big deal, started on antibiotics and we thought it was going to clear up in a day or two, and it didn’t. He got to where he couldn’t walk, he was like he was 90 years old in the span of 48 hours. It was crazy. He literally couldn’t get up out of a chair.”
His pediatrician was stymied as test after test revealed no clues. “Meanwhile, he was getting sicker, he had high fevers and he was really ill.” His condition had doctors baffled and taking infectious disease precautions (pre-Covid). “Everyone was all suited up, nobody knew what was going on.” Finally, they landed on juvenile arthritis. For five years he’s been on medication, which has helped, but recently James had a flare-up. A biologic drug has helped with that. However, “It is insanely expensive,” Liz said. “It’s like buying a used car every month. Its literally thousands of dollars.” Fortunately the family has insurance to cover the cost. “It really helps him, it’s kept his disease at bay, he plays soccer (as a keeper, no less), he’s always been an active kid, he was playing football (defensive line), but isn’t able to play this year. We’re struggling to get it back under control, and we will.”
To register to run go to http://getmeregistered.com/bonedash5k. In addition to the runs, princesses and superheroes will be in attendance to greet their young fans. And costumes are encouraged.
“We’re trying to make this thing a big Halloween bash,” Emma said. “Our division is going to be all dressed up in costumes, and we are encouraging the families to do so as well.”
Willow O’Sullivan is a happy nine-year old who suffers from polyarticular juvenile idiopathic arthritis, a condition affecting her joints.