When Kenley Huss was 14 months old, she was still not walking. That can be completely normal for children but her parents noticed that she wasn’t able to bear much weight and when she tried to walk, she cried out in pain. She was examined by doctors and no cause for her pain was found. Kenley continued to have pain and high fevers, then, her knee stopped moving when she was trying to walk. Once again, they went to the doctor and this time they were told Kenley might have juvenile arthritis.
Kenley’s parents were told to monitor her for six weeks and they began learning a lot about juvenile arthritis very quickly. They were in shock and had many questions. After six weeks, Kenley was officially diagnosed with oligoarticular juvenile idiopathic arthritis (JIA). Kenley began treatment, including steroid injections in her joints for which she had to be put under anesthesia. Over the course of 15 months, Kenley had injections in her knees, one wrist, one ankle, her big toe and her pinky.
Kenley managed the injections very well for being so young while her doctors tried other treatment and medications. Along with medication, Kenley also had to have her blood drawn and eyes checked, experiences she handled with the strength of an adult.
Now 6, Kenley went into remission with no medication for a year but started experiencing JIA symptoms again in 2015. Kenley has had a couple small flares the past year but she is doing well and handling her disease like a true trooper.
“This is our journey, which will continue but we don’t know what is in store for Kenley,” says Kenley’s mom. “We don’t want other families to be in such a state of shock, like we were, if their child is diagnosed with JIA.”
Kenley and her family, along with their amazing team and support system, fundraise and spread awareness for JA to help other families and children like Kenley. The Kenley’s Krew Walk to Cure JA team has grown from 13 people to 75 people and raised over $11,000 in 2015 alone. This year, they hope to surpass their goal once again and hope you will join them in the fight against arthritis as a Champion of Yes!
Young Adult Honoree
Jack Friedges, age 17, was diagnosed with juvenile idiopathic arthritis (JIA) in 2014. Jack’s parents believe he had signs of JIA throughout his childhood but attributed them to other causes. Jack was very active; he was and continues to be a three-sport athlete playing football, basketball and his favorite sport, baseball. At age 13, Jack started complaining about odd sensations in his hands and that his fingers were “big, fat and did not work.” Jack and his parents thought his sore hands were related to his active life.
Eventually, Jack’s mom started noticing more and more that Jack was not using his hands. His brother would change fishing line for him, he had trouble tying his shoes or buttoning his shirts and she saw how much Jack was relying on his brother to do these tasks for him. Over several months, Jack was officially diagnosed with JIA and his pain started to intensify and spread to his hands, feet, knees, elbows, shoulders and back.
Although Jack’s optimistic attitude was unbeatable, it was a difficult time for their family. After six months of pain, Jack’s medication started working and his pain and swelling decreased dramatically. Jack has taken charge of his health, learning about his medication side effects and what triggers swelling or pain. “He does all this while being the most positive member of our family when it comes to this diagnosis,” says Jack’s mom. “His strength to move on, stay positive and be in control of his life is astonishing.”
Jack, as the Young Adult Honoree, and his family want to help raise money for a cure as well as spread awareness about JIA. They may be uncertain of Jack’s future but appreciate the resources, education and hope that the Arthritis Foundation has provided them. They are positive that JIA will not define Jack’s future and he will be the Champion of his own life.
Jennifer, or Jennie, Dietz has lived with juvenile arthritis (JA) for 42 years. She was diagnosed when she was only 1-year-old and considers herself a 42 year survivor of the disease. When Jennie was learning to walk, she chipped a bone in her ankle and was in a cast for a period of time. The swelling in her ankle persisted. She eventually received an official diagnosis of JA and was put on minor medication, in the seventies there were limited medication options for a child with arthritis.
Jennie remembers being stiff and sore throughout her childhood. She didn’t like taking her medication and she remembers her mom would give her warm baths to soothe her joints. Jennie never saw a rheumatologist in her childhood. Growing up was a challenge for her, her parents had to fight to send her to school and for her to be able to participate in activities. In her teens, doctors at Gillette Children’s Hospital diagnosed Jennie with growth hormone deficiency and Turner syndrome. At Gillette Children’s Hospital Jennie had the first of many surgeries throughout her life that included a neck fusion, surgery on her feet to remove spurs and cut tendons in her toes and fusion of her left thumb.
Later in life, Jennie was diagnosed with ulcerative colitis and ankylosing spondylitis and most recently, osteoarthritis and osteoporosis. In just the last ten years, Jennie has had surgery on her knee and another surgery on her foot. In 2012, Jennie began four straight years of joint replacements for her knees, shoulders and hips. She is currently treated at HCMC.
To say Jennie has been through a lot in her 44 years of life would be an understatement. As she faces a new chapter in her life with new joints, she knows she will take it on and succeed with flying colors. It’s her nature to face things as they come, even though she wishes she didn’t have to. That is why she hopes for a cure and hopes other children don’t face the same trials she had growing up. For now, Jennie continues to be a Champion of her own life and all she has to say is “bring it on.”
Pediatric Physical Therapist
Katie Wilkins is a pediatric physical therapist at Gillette Children’s Specialty Healthcare. She has presented at numerous local conferences on physical therapy management of joint hypermobility and Ehlers Danlos Syndrome, in addition to serving on the rheumatology committee at Gillette.She is a guest lecturer at the University of Minnesota’s physical therapy program and is the coordinator of clinical education at Gillette.
Katie enjoys treating patients of all ages and conditions.She has a special interest in treating musculoskeletal injuries in young athletes as well as patients who have joint hypermobility syndrome, Ehlers Danlos Syndrome and arthritis. She strives to find ways to keep her patients active while managing injuries and joint pain.
Katie recognizes the importance of managing a patient’s arthritis as a team approach and is privileged to work at Gillette with an amazing team of physicians, nurses, nurse practitioners, therapeutic recreation specialists, psychologists and rehabilitation specialists.
As a previous UW-La Crosse collegiate gymnast, Katie sustained numerous musculoskeletal injuries and has experienced the rehabilitation process firsthand. Understanding the frustrations of rehab, her goal is to keep patients active during recovery, modify activities when needed, and make the experience as enjoyable and as fun as possible.
Inspired by her young patients who successfully manage arthritis on a daily basis, Katie feels extremely privileged to collaborate with them as they journey through childhood and into adolescence while continuing to participate in all the activities they enjoy. The Arthritis Foundation is an incredible resource for patients and families and Katie is committed to advocating with the Foundation in pursuit of helping patients who have arthritis lead active and fulfilling lives.
Katie is honored to be a part of the Walk to Cure Arthritis Juvenile Arthritis event this year and is excited to join all the Champions of YES in celebration of their fundraising efforts! It will be an incredible morning of positive energy, excitement and celebration.