Background: Children's Hospital of Wisconsin in Milwaukee, Wis. (Google Maps). Inset: Ashtyn Fellenz (Facebook).
A lawsuit against a Wisconsin hospital that discarded a donated brain meant for research has been dismissed.
The lawsuit against Children's Hospital of Wisconsin, also referred to as Children's Wisconsin, was filed by the parents of 24-year-old Ashtyn Fellenz, who died at the hospital in December 2024. Ashtyn Fellenz lived with Canavan disease, a rare and terminal brain disorder, and after her death, her parents Arlo Fellenz and Scott Fellenz agreed to donate her brain for research purposes to shed more light on the disease.
According to reporting by the Milwaukee Journal Sentinel, Ashtyn Fellenz underwent experimental gene therapy that was able to extend her life significantly. Having her brain tissue studied could have provided insight into how such therapies could affect Canavan and similar neurodegenerative conditions.
But despite successfully removing and storing Ashtyn Fellenz's brain following her death, the portion that was meant to be used for research was apparently accidentally discarded.
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In dismissing the lawsuit on Nov. 17, Milwaukee Circuit Court Judge Timothy Witkowiak stated that the Fellenzes, who were suing the hospital for damages caused by its mistake, did not have a valid claim. Siding with Children's Wisconsin, Witkowiak agreed that once the donation was handed over to the hospital, the parents of the patient relinquished their rights to it.
However, Witkowiak said during the hearing that his decision did not mean that Children's Wisconsin did not make a mistake. The judge apologized to the Fellenz family and said, "I would think that this case would be a reason for them to take a look at all their protocol and see what went wrong here, because it went wrong in a major fashion."
Children's Wisconsin admitted to the mistake in a statement provided to local Fox affiliate WITI. In May, just before the lawsuit was filed, a spokesperson told WITI in part, "[O]ur team is profoundly sorry this happened, and we continue to take steps to reinforce our protocols to help ensure this does not occur again," adding, "We are deeply grateful for Ashtyn's life and for her family's advocacy and care, and again offer our most sincere regret and apology."
During its investigation, WITI received emails from Children's Wisconsin staff that indicated that the process of removing and storing Ashtyn Fellenz's brain went perfectly. Both halves of her brain were going to be sent to Living BioBank at Children's Hospital in Dayton. Instead, the brain tissue collected dust in a laboratory at Children's Wisconsin for months until it was "erroneously disposed of," the hospital told WITI.
The hospital spokesperson added, "None of the above is an excuse for the remaining tissue sample being accidentally disposed of and for the delay in realizing and communicating this error."
Ashtyn Fellenz was one of 16 patients who underwent the experimental therapy, but out of all of them, she lived the longest. Canavan disease causes the degeneration of the protective coating that surrounds nerves and the white matter of the brain. As the disease progresses, patients essentially become trapped in their own bodies while losing control of their muscles. Patients diagnosed with Canavan disease usually do not live past 10 years old.
Ashtyn Fellenz defied the odds and lived to 24 years old before her death on Dec. 5, 2024.