Providing Answers, Support and Hope in Kansas, Missouri, and Central & Southern Illinois
In September 2023, our 10-year-old daughter, Olivia, began experiencing a rash after a family vacation to Florida. At first, it seemed like a minor skin issue—something that would clear up with time. But as the weeks passed and the rash persisted, we grew concerned. Olivia was prescribed several facial creams and medications, with doctors suspecting it might be a fungal or bacterial infection. However, as the days went by, Olivia’s condition worsened.
By early November, Olivia began feeling weaker, and the rash had taken on the telltale shape of a butterfly, a hallmark sign of lupus. Her school nurse, recognizing the symptoms, urged us to seek further medical help. We were fortunate to be referred to a pediatric dermatologist with strong ties to the pediatric rheumatology team at Lurie Children’s Hospital in Chicago. On December 8, 2023, Olivia was diagnosed with systemic lupus erythematosus (SLE).
The diagnosis came with another blow—Olivia’s initial lab work indicated there could be kidney involvement. She was quickly admitted to Lurie’s for further tests, and a kidney biopsy confirmed that she also had lupus nephritis. At this point, Olivia was nearly immobile, her joints swollen with fatigue, and she could barely move. The diagnosis came just a few days before her 11th birthday.
It has been less than a year since Olivia’s diagnosis, but we already feel incredibly fortunate. Throughout this journey, we have been in awe of the medical professionals who recognized the symptoms early on and provided such attentive care, particularly Dr. Chun, whose swift diagnosis and treatment plan have been life changing. Dr. Chun even used Olivia’s case as a study, helping to advance understanding of lupus in children.
Despite the challenges, Olivia has shown remarkable strength. Her resilience and positive attitude have been a beacon of hope for our family. She isn’t ashamed of her condition; instead, she approaches it with confidence and determination. Olivia was especially inspired by Selena Gomez, learning that someone as accomplished as Selena also battles lupus. Watching Selena’s documentary, My Mind and Me, gave Olivia a sense of connection and hope that she too could lead a fulfilling life despite her diagnosis.
Olivia has embraced her journey and has actively shared her story to raise awareness. She brought wristbands to her classmates in May, encouraging them to learn more about lupus. Our family also relocated from Illinois to Kansas City in the summer of 2023, and when we saw a lupus walk at Shawnee Mission Park, we knew it was a sign. We joined the event, feeling that we were moving from one community of warriors to another.
Though Olivia’s journey is still in its early stages, we are filled with gratitude for her medical team, her strength, and the lupus community that has supported us. We are reaching out to share Olivia’s story and to ask for your help in raising awareness, funding research, and improving care for children like Olivia who are living with lupus.
Your support can make a real difference in the lives of children facing this life-altering disease, and we hope you will join us in the fight against lupus.
Thank you for being part of Olivia’s journey.
With gratitude, The Ziegler Family