Children’s Hospital in Wisconsin Disposes of Donated Brain

A children’s hospital in Wisconsin has admitted to mistakenly throwing away the brain of a young woman who had donated it for research purposes. This woman, Ashtyn Fellenz, had undergone experimental gene treatments for a rare degenerative disease, and researchers had hoped her brain would yield important insights.

Ashtyn passed away at the age of 24 on December 5, 2024, after being diagnosed with Canavan Disease as a child. This condition is a rare genetic disorder that leads to the deterioration of the protective coating around nerves and a consequential loss of white matter in the brain.

Typically, children with Canavan Disease see a gradual loss of muscle control, ultimately becoming trapped in their bodies. Without treatment, most of these children do not survive past the age of 10.

At just three years old, Ashtyn underwent experimental surgery that involved injecting a working gene into her brain. While it did not cure her condition, it effectively extended her life by about ten years.

Dr. Paola Leone, a Cell Biology professor at Rowan University, had requested that Ashtyn’s brain be preserved post-mortem. She believed it could provide critical information regarding both the disease and the responses to the experimental therapy.

Interestingly, while several other children had received similar treatments, Ashtyn’s unique case made her brain particularly valuable for study. Most Canavan patients typically die at home, which makes timely autopsy and preservation difficult. However, Ashtyn died in the hospital, where immediate action could be taken to save her brain for research.

Leone noted, “The scenario was perfect. She was in the hospital. The dry ice was there, ready to go.” According to Ashtyn’s parents, Scott and Arlo Fellenz, the plan to donate her brain after her death had always been in place. “It was no question that we had to do that,” Scott mentioned, emphasizing the significance of her legacy.

Regrettably, Fellenz’s brain will not contribute to scientific advancement. Upon her passing, hospital staff interpreted a prior consent form signed by her parents as outdated and insisted on a new one before transporting her brain to Living BioBank in Dayton, Ohio.

Despite Leone’s efforts to provide the renewed consent form, a prolonged period of inaction followed. In an email from Dr. Lauren Parsons, the hospital’s Director of Pathology, she acknowledged delays caused by “holidays and leadership transitions.” This prompted concerns from the Fellenz family, who felt ignored as months went by without progress.

In March, after significant frustration, Arlo called the hospital seeking answers. The family was then informed that Ashtyn’s brain had been inadvertently disposed of. “They tossed out her brain. How can you do that with a brain?” Arlo expressed in disbelief.

While some of her brain tissue was eventually sent to Ohio, Leone had hoped to study the portion that hadn’t received the experimental treatment for its potential insights.

Scott remarked that it felt like losing his daughter all over again. For Leone, it represented a missed opportunity for vital knowledge that could have benefited those grappling with genetic conditions. “This would have just paved the way for future applications of gene therapy,” she said, lamenting the loss of such a unique specimen.

A spokesperson for Children’s Wisconsin conveyed their profound remorse, stating they honored Ashtyn’s family’s wish for her legacy to aid others. They reiterated their commitment to reinforcing protocols to prevent such errors from happening again.

In response to the incident, the Fellenz family has engaged an attorney, aiming to direct any financial restitution toward further Canavan research.