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Daughter's diagnosis gives doctor new view of patient care
Mike Levas, MD, a pediatric emergency physician at Children’s Hospital of Wisconsin, spends his days and nights taking care of kids when they’re hurt or sick. But when Mike’s daughter, Stella, was diagnosed with a chronic disease, he gained new insight into the struggles families face each day.
When Stella was just 19 months old, Mike and his wife Leigh noticed some troubling symptoms. Her right knee had become swollen, and she couldn’t put any weight on her right leg. Within a few weeks, Stella’s left knee, ankle and thumb were also inflamed. A month later, she couldn’t bend her knees.
Tests revealed that Stella had polyarticular rheumatoid juvenile arthritis, a condition that causes inflammation in multiple joints – often the small joints of the fingers and hands. It happens when the immune system becomes overactive and attacks healthy cells and tissue.The diagnosis was tough to take. Mike and Leigh knew it would change the future for their daughter and their entire family. As a physician, Mike struggled to find his role in journey ahead.
“It’s difficult to be on the other side of the medical process. As a health care provider, I’m trained to take care of children when they have a health issue,” Mike says. “When it’s my own child who needs care, that barrier blurs. I want to be her dad not her doctor.”
Putting their fears aside, the Levases focused on Stella’s care, which includes weekly shots to suppress her immune system, pain medication, careful monitoring and bi-yearly visits to the ophthalmologist to check for signs of eye damage, which can be part of the disease. The family works closely with Stella’s doctor, James Nocton, MD, a pediatric rheumatologist at Children’s.
Today, Stella is a bright, active 7-year-old second-grader who has adapted to her condition. Because her thumbs don’t flex fully, Stella modifies her grasp of pencils and crayons so she can write and draw. If her joints are hurting during a soccer game, she asks to play a position that requires less running.
“Arthritis is a life-long disease, and Stella has learned to live with a level of pain, Mike says. “She’s not a complainer, so we don’t always know what she’s going through.”
The Levas family, which also includes Sophie, 9, and Lili, 6, has been active in the Arthritis Foundation’s efforts—and supports the annual Jingle Bell Run/Walk to raise awareness and funds for research to fight the disease. Although Stella doesn’t usually like to be in the limelight, she’s happy to share her story to support the cause—and was chosen as this year’s Arthritis Foundation junior honoree. While Stella’s disease has been difficult for the Levas family to face, they try to see the positives, including the opportunity to help make a difference for other kids facing the diagnosis.
“This experience has made me a better doctor in terms of relating to people. I have more empathy for what families are going through—and I often share my story with families facing a chronic disease,” Mike says. “It’s important to let them know that this type of diagnosis can be tough to hear, but it doesn’t define their child. Juvenile arthritis hasn’t changed who Stella is or her role in our family.”
Pictured: Mike and Leigh Levas with their daughters, Stella (left), Lili (middle) and Sophie (right). Photo courtesy of Uttke Photography and Design.
Shake it up!
To raise awareness and funds for the Arthritis Foundation in their daughter’s honor, Mike and Leigh Levas have organized a Zumbathon on Friday, Oct. 2, from 6:30-8 p.m. The fundraiser will be held at the West Wood Health & Fitness Center, 2900 Golf Road, Pewaukee. Cost is $10 at the door; anyone 16 and older is welcome to attend