Name: Zuzia Macheta
Hometown: Gogolin, Poland
The past: Zuzia was born with a devastating skin disease called epidermolysis bullosa (EB). Described by University of Minnesota pediatric hematologist-oncologist Jakub Tolar as “the worst disease you’ve never heard of,” the disease can be fatal in its most severe forms.
Where the U comes in: The Macheta family learned about a clinical trial at University of Minnesota Masonic Children’s Hospital, under Tolar’s direction, that offers a chance for a cure. The U is the only place in the world where a cure-focused EB therapy is available. After Zuzia made a TV appearance telling her story, the family raised around $1.5 million for travel and treatment.
What happened: Zuzia received a bone marrow transplant from her younger sister, Ala. She had three infusions of special “nurturing” stem cells called mesenchymal stromal cells post-transplant.
How donors helped: A gift from the Richard M. Schulze Family Foundation makes this treatment available to kids like Zuzia. Tolar says the flexibility philanthropic support provides is crucial to being able to explore new ideas.
Faculty support makes a difference, too: Tolar is a Distinguished McKnight Professor and holder of the Edmund Wallace Tulloch and Anna Marie Tulloch Chair in Stem Cell Biology, Genetics, and Genomics.
The present: Before her transplant, wounds covered Zuzia’s legs from her midthighs to her ankles. Today, she’ll proudly show her new skin to anyone.
The best part: Zuzia and 7-year-old Ala can now tickle, tackle, and hug each other freely. Says Zuzia’s mother, Sylwia: “I still catch myself repeating the old warnings—be careful, don’t run, you can hurt yourself—and she says, ‘Mom, it’s after the transplant. My skin is good now.’”
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