Donated brain gets put in trash
Background: Children's Hospital of Wisconsin in Milwaukee, Wis. (Google Maps). Inset: Ashtyn Fellenz (Facebook).
A lawsuit against Children’s Hospital of Wisconsin over a donated brain intended for research has been dismissed.
The case, brought by the parents of 24-year-old Ashtyn Fellenz, stemmed from her death at the hospital in December 2024. Fellenz, who had Canavan disease—a rare and terminal brain disorder—had her brain donated to research in hopes of advancing understanding of the condition.
Ashtyn had undergone experimental gene therapy that extended her life significantly, making the donation potentially valuable for studying the effects of such treatments on Canavan disease and similar neurodegenerative disorders.
Despite the successful removal and storage of Fellenz’s brain, the portion intended for research was mistakenly discarded. In a Nov. 17 ruling, Milwaukee Circuit Court Judge Timothy Witkowiak sided with Children’s Wisconsin, stating that the parents no longer had legal rights to the brain once it was donated.
Judge Witkowiak acknowledged the hospital’s error, apologizing to the Fellenz family and noting the case highlights the need for a review of hospital protocols.
Children’s Wisconsin admitted the mistake in a statement, saying, “Our team is profoundly sorry this happened, and we continue to take steps to reinforce our protocols to help ensure this does not occur again. We are deeply grateful for Ashtyn’s life and her family’s advocacy and care, and again offer our most sincere regret and apology.”
Investigations revealed that both halves of Ashtyn’s brain were intended to be sent to Living BioBank at Children’s Hospital in Dayton. Instead, the tissue remained in a lab at Children’s Wisconsin for months before being mistakenly disposed of.
Ashtyn Fellenz was one of 16 patients who received the experimental therapy and lived the longest among them. Canavan disease, which causes the degeneration of nerve-protecting tissue and brain white matter, usually limits patients to a life expectancy of around 10 years. Ashtyn defied the odds, living to 24 before her death on Dec. 5, 2024.
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