A woman donated her brain so scientists can study groundbreaking treatments. A lab accidentally threw it away
A children's hospital in Wisconsin said it accidentally handled the brain of a young woman donated for research. The woman has conducted groundbreaking gene therapy for rare degenerative diseases, and researchers hope that studying the brain will provide valuable data.
Ashtyn Fellenz died on December 5, 2024. As a kid, she was diagnosed with Canavan disease, a rare genetic disease that causes degeneration of the coating that protects white matter loss in the nerves and brain, according to FOX 6.
Often, children with illness gradually lose the ability to move their muscles and effectively lock onto their own body. Without treatment, most children with the disease die before the age of 10.
In 2003, Felenz underwent an experimental surgery at the age of three, which injected functional genes into her brain in the hope that it would replace the defective genes. Although it couldn't cure her disease, it did give her a decade of life.
Paola Leone, a professor of cell biology at Rowan University, asked Fellenz's brain to be preserved after her death, hoping it could provide invaluable data on the disease and the body's response to her experimental treatment.
Children's Hospital on campus in Milwaukee, Wisconsin. The hospital accidentally discarded Ashtyn Fellenz, a 24-year-old woman who died of Canavan Diease. The brain could have been donated to scientific research, which could help scientists better understand the diseases and pioneering genetic treatments women received as children. (Google Maps)
Although 16 other children received similar treatments, her death made her brain particularly suitable for preservation.
According to Leone, most Canavan patients die at home and their brain tissue degrades when they are properly autopsy.
However, Fellenz died at Wisconsin Children's Hospital and doctors could quickly work to save her brain.
Leon told Fox 6. “This is perfect. She is in the hospital. Dry ice is there and ready to go.”
According to her parents, Scott and Arlo Fellenz, donating the brain has always been a plan after her death.
“We have to do that, no doubt,” Scott said. “It's a big part of her legacy.”
Unfortunately, the secret of Ferenz's brain will never be discovered.
When she died on December 5, Wisconsin Children's officials decided that the previous donation consent form signed by her parents was outdated and they would need to fill out another donation form before they could transport their brains to Children's Hospital in Dayton, Ohio before they could live.
Although Leone provided consent form for children in Wisconsin, the sample was not sent for a month.
On January 13, more than a month after Fellenz's death, Dr. Lauren Parsons, director of childhood pathology in Wisconsin, wrote an email to Leone thanking her for her “patience” and noting that “the holidays and some leadership transitions” have tied the staff.
Leone said there were two more months without a brain, adding that many of her emails questioned holdings were not answered.
Scott Fellenz told the broadcaster that Parsons is “literally a ghost [Leone] Two months. ”
In March, Arlo Fellenz called the hospital to ask for an answer. Her phone was returned from the hospital's “Grief Service” workers who wanted to have a meeting. She waved the meeting and asked them to tell her what she needed to say over the phone.
The hospital then told the family that they had accidentally “disposed” Ferenc's brain.
“They threw away her brain. How can you do this with your brain?” Alo said in an interview with Fox 6.
Half of Fellenz's brain was eventually shipped to Ohio, but Leone was most interested in the information that his other half (the half that has not yet received an experimental injection) might reveal.
Ferenz's father said it felt like he had lost his daughter again. For Leone, the loss also represents a potential loss of knowledge that can help people with genetic conditions.
“It would have been possible, just paving the way for any other gene therapy to apply in the brain to let us know if gene therapy can last,” she told the broadcaster. “This is the loss of information that would have been valuable and cited over the years to come, because it is the only specimen, not just for Canavan, for any other gene therapy,
A Wisconsin Children's spokesman said they were “deeply sorry” about the mistake.
“We are honored to support Ashtyn's family's desire to help others in her legacy. When we discovered this mistake, we communicated with our family and reiterated that our team felt very sorry for it and we continued to take steps to strengthen the agreement to help ensure that this does not happen again,” they said in a statement.
“The availability of human tissue to support life-changing and life-saving medical research is crucial to providing hope for families. We seriously support research through proper tissue collection, storage and usage. We are deeply grateful for Ashtyn’s life and for her family’s advocacy and care, and once again provide our most sincere regrets and apology.”
When FOX 6 asked further, the hospital said they had a “comprehensive process” to manage the donated organization, and the donated organization “didn't follow”, resulting in the error.
The Fellenz family has now hired lawyers to represent them and will use any funds to help Canavan Research.
