Michaela L. & Haley W.
Wilson Disease
Michaela Layton was diagnosed at age 17 with Wilson Disease, a rare genetic disease that causes copper buildup in the liver. She was a healthy, athletic young woman who rarely got sick, and when she did, she thought she might have the flu. Blood tests at her local hospital proved otherwise and she was immediately sent to UW Hospital and Clinics, where tests revealed Wilson disease.
She was admitted to UW Hospital and Clinics to wait for her only hope, a liver transplant.
“Patients with Wilson Disease – mostly teens and young adults – become extraordinarily ill extremely quickly because of the sudden release of copper from the liver, and are in immediate need of liver transplant,” says transplant hepatologist Alexandru Musat, MD. “The disease is very frightening because it progresses so quickly and patients have a very real risk of dying from swelling of the brain. Thankfully, transplant is curative and young people like Michaela, who receive a transplant, are able to lead a very normal life.”
Just four months later, Haley Wilber, a freshman in high school at the time, became very ill with the same disease and received a liver transplant. One month after Haley’s transplant, Michaela and Haley were introduced to each other by Beth Gerndt-Spaith, RN, their transplant coordinator. They soon became close friends, frequently talking, texting and meeting for meals.
“Our friendship has helped us both realize we are not alone on this journey,” said Michaela. “I think it really helped our parents a lot too – to share their worries and experiences.” Haley says, “Michaela is the only person who knows exactly how I feel. She will forever be a friend to me and I am so grateful to have her and her family in my life.”
Both girls are now living healthy, vibrant lives, are pursuing their dreams at college and continue to be active in the transplant community. Both have shared their stories in ad campaigns and videos and Michaela promotes donation at a blood drive in her community. She is currently studying to become a transplant nurse.
Each summer they get together for the Capital City 5k Run/Walk for Organ, Tissue and Eye Donation, where these “Wilson Sisters” walk to honor their donors and work to promote donation and bring hope to others. Haley is currently the first patient enrolled in a world-wide study of pediatric liver transplant recipients. The study is investigates how to reduce the long-term kidney dysfunction that can occur with extended use of anti-rejection medication.
“To have two pediatric patients the same age with the same disease within a small time frame is a rare event,” said Tony D’Alessandro, MD, liver transplant surgeon. “Their friendship reaches from each other to their families to the entire transplant community, which benefits from their outreach efforts. They understand that when more people become donors, they give more patients a bigger window of time and more hope. In their cases, that window could have been missed if not for the generosity of their organ donors.”
Wilson disease is very rare and will develop in one in 30,000 people. Of the 2,000 liver transplants performed at UW Hospital and Clinics since the liver transplant program’s inception in 1984, 25 have been for patients with Wilson disease.
Story courtesy of American Liver Foundation Upper Midwest Division and UW Health Transplant System.
Last Updated on April 17, 2020
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