MILWAUKEE, Wisconsin – A Wisconsin family’s lawsuit against Children’s Wisconsin over the accidental disposal of their daughter’s donated brain tissue has been dismissed by a Milwaukee judge. The case centered around 24-year-old Ashtyn Fellenz, whose family hoped her brain tissue would advance research into Canavan disease, a rare and fatal neurological disorder. Despite the dismissal, the court acknowledged that the hospital made a serious mistake in handling the donation.
Incident Overview
The lawsuit was filed by Arlo and Scott Fellenz, parents of Ashtyn Fellenz, who died at Children’s Hospital of Wisconsin on December 5, 2024. Born with Canavan disease, Ashtyn had undergone experimental gene therapy, which extended her life far beyond the typical prognosis. After her passing, her family agreed to donate her brain for research, believing it could provide critical insights into future treatments.
According to reporting from the Milwaukee Journal Sentinel, researchers hoped the tissue would help scientists better understand how gene therapy affects degenerative brain conditions like Canavan. The donation was intended for the Living BioBank at Children’s Hospital in Dayton.
A portion of her brain, however, was “erroneously disposed of” at Children’s Wisconsin after being improperly stored for months, the hospital acknowledged.
Court’s Decision and Reasoning
On November 17, Milwaukee Circuit Court Judge Timothy Witkowiak dismissed the Fellenz family’s lawsuit. He ruled that because the family had already donated the brain tissue, they legally relinquished rights to it, meaning they could not sue for damages over how it was handled.
But the judge did not downplay the seriousness of the mistake. During the hearing, he openly apologized to the family, stating:
“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.”
His remarks underscored that while the law may have prevented compensation, the hospital’s error was nonetheless significant.
Details Revealed During Investigation
During the investigation, emails obtained from Children’s Wisconsin staff showed that the process of removing and storing Ashtyn’s brain initially went smoothly. Both halves were supposed to be shipped to the Living BioBank for detailed research.
Instead, the brain tissue sat in a lab “collecting dust” for months before being accidentally discarded, the hospital said. The hospital spokesperson later admitted:
“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.”
The spokesperson also emphasized that the team was “profoundly sorry” and was taking steps to strengthen protocols to ensure such an incident does not happen again.
About Ashtyn Fellenz and Canavan Disease
Ashtyn was one of only 16 patients to receive the experimental therapy for Canavan disease. Out of that group, she lived the longest. Canavan disease causes the deterioration of the white matter in the brain, stripping away the protective coating around nerves. Patients gradually lose muscle control, mobility, and communication abilities.
Most children diagnosed with the condition do not live past age 10.
But Ashtyn defied expectations, surviving until age 24, making her one of the longest-living Canavan patients ever documented.
Her family hoped that by donating her brain, researchers could learn why she responded differently to treatment—and potentially help future patients.
Importance of Donated Tissue in Rare Disease Research
Donated tissue from patients with rare neurological conditions is incredibly valuable for medical research. Because so few individuals live into adulthood with Canavan disease, adult brain samples are exceptionally rare, making Ashtyn’s donation even more significant.
Such tissue can help scientists understand how experimental therapies work at a cellular level, paving the way for improved treatments and potentially longer life expectancy for future patients.
This is why the accidental disposal of Ashtyn’s tissue represents not only a personal loss for her family but also a missed scientific opportunity.
Conclusion
The lawsuit dismissal brings a legal end to the case, but the emotional impact on the Fellenz family remains. While the court ruled that the family had no legal claim, the judge made clear that Children’s Wisconsin failed in its responsibility to handle the donation properly.
As the hospital reviews its protocols, the case stands as a reminder of the profound responsibility medical institutions carry when entrusted with critical research materials.
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