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The Walk to Cure Juvenile Arthritis raises funds and awareness for juvenile arthritis, which, according to the Arthritis Foundation, affects more children than juvenile diabetes, cystic fibrosis and muscular dystrophy combined. Nearly 300,000 American children suffer from the autoimmune disorder, which causes inflammation of the joints, swelling, pain, stiffness and loss of motion.

In Kenley's case, it was impeding her ability to learn to walk.

"She was 14 months old and she was really tentative with her walking," her mother, Dongi Huss, said. "She would walk and fall and cry, take a couple more steps, then fall and cry again. I knew there was something wrong, but I had no idea what was going on."

Kenley was officially diagnosed with oligoarticular juvenile idiopathic arthritis at 16 months old. She began receiving steroid injections in her joints to help prevent any long-term damage while doctors tried to determine which medication would work best for her. Now 7 years old, Kenley has been on medication almost continuously since that time.

Huss said the drugs have helped keep her daughter's symptoms under control.

"It's not something you want your kids to be on long-term, but it helps," she said. "You have to try to find that balance between medication and quality of life long-term."

Huss said Kenley's symptoms are not severe enough that she requires more invasive IV treatments like some kids so. Other than having to visit a rheumatologuist and an eye doctor and have her blood drawn several times a year, she leads a fairly normal life. She is even active in baton twirling and dance.

"She's like any other kid," Huss said." As long as her medication is working, she does everything her friends do."

On Friday, Kenley conducted a live interview on WCCO "This Morning" to help provide awareness for her condition. And Saturday she got to share her story with 2,000 people at the The Walk to Cure Juvenile Arthritis kickoff celebration at the Mall of America.

"She read her speech and she was so amazing, and then I cried" Huss said.

After the pre-event festivities, which included face painting, hair painting and entertainment, Kenley's team of supporters walked several laps around the Mall of America to help raise awareness. This year, Kenley's Krew raised more than $12,500 to help fund research on juvenile arthritis in hopes of identifying better treatments and a cure.

"We had over 75 people walking with us, cheering us on, and clapping and screaming and jumping up and down," Huss said. "It was an amazing experience. It really was."

Kenley said she thought it was important to make more people aware of her juvenile arthritis. She also enjoyed her little brush with fame.

"I really liked being on TV so my friends could watch," she said.

Huss said the Arthritis Foundation has done an amazing job of advocating for kids with juvenile arthritis, and she was grateful for the opportunity to connect with others who are dealing with the same condition.

"For us, it's just so important to raise awareness because we had no idea this even existed until we got Kenley's diagnosis," Huss said. "There are almost 300,000 kids who have this, and we had no idea. It's important for people to know there are a lot of super tough kids out there that are battling and dealing with this. The more I get the word out, the more available we are to other families that might be dealing with this, and they will know they are not alone."

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Rosemount girl is Arthritis Foundation's 2017 Youth Honoree - Rosemount Town Pages

This entry was posted on March 9, 2017 at 1:41 am and is filed under Arthritis. You can follow any responses to this entry through the RSS 2.0 feed. Both comments and pings are currently closed. |