A woman donated her brain so scientists could study a pioneering treatment. A laboratory accidentally threw it out
Ashtyn Fellenz died at age 24 on December 5, 2024. As a child, she was diagnosed with Canavan Disease, a rare genetic disorder that causes the degeneration of the coating that protects nerves and a loss of white matter in the brain, according to Fox 6.
Typically, children suffering from the disease progressively lose the ability to move their muscles and effectively become locked in to their own bodies. Without treatment, most children with the disease die before the age of 10.
In 2003, when she was three years old, Fellenz underwent experimental surgery that saw a functional gene injected into her brain, with the hopes that it would displace the defective one. While it didn't cure her disease, it did buy her a decade's worth of life.
Dr Paola Leone, a professor of Cell Biology at Rowan University, requested that Fellenz's brain be preserved after her death, hoping that it could provide priceless data about both the disease and the body's response to her experimental treatment.
While 16 other children also received similar treatment, the circumstances of her death made her brain especially ideal for preservation.
According to Leone, most Canavan patients die in their homes, and their brain tissues degrade by the time they can be properly autopsied.
Fellenz, however, died at Children's Hospital Wisconsin, where doctors could work quickly to save her brain.
"The scenario was perfect," Leone told Fox 6. "She was in the hospital. The dry ice was there, ready to go."
Donating the brain was always the plan following her death, according to her parents, Scott and Arlo Fellenz.
'It was no question that we had to do that,' Scott said. 'It was a big part of her legacy.'
Unfortunately, the secrets of Fellenz's brain will never be uncovered.
When she died on December 5, officials at Children's Wisconsin decided that a previous donation consent form signed by her parents was out of date and that they would need to fill out another before the brain could be shipped to Living BioBank at the Children's Hospital in Dayton, Ohio.
Despite Leone providing Children's Wisconsin with the consent form, a month passed and the sample still hadn't been sent.
On January 13, more than a month after Fellenz's death, Dr Lauren Parsons, Director of Pathology at Children's Wisconsin, wrote an email to Leone thanking her for her "patience" and noting that "holidays and some leadership transitions" had kept the staff tied up, according to Fox 6.
Two more months passed without the brain being sent, Leone said, adding that many of her emails questioning the hold up were left unanswered.
Scott Fellenz told the broadcaster that Parsons "literally ghosted [Leone] for two months."
In March, Arlo Fellenz called the hospital demanding answers. Her call was returned from the hospital's "grief services" workers, who wanted to set up a meeting. She waved off the meeting and demanded they tell her what they needed to say over the phone.
The hospital then told the family they had accidentally 'disposed' of Fellenz's brain.
"They tossed out her brain. How can you do that with a brain?" Arlo said during an interview with Fox 6.
Half of Fellenz's brain did eventually get shipped to Ohio, but Leone was most interested in the information that the other half — the half that had not received the experimental injection — could reveal.
Fellenz's father said it felt like he had lost his daughter again. For Leone, the loss also represents a loss of potential knowledge that could have helped people suffering from gene conditions.
"This would have just led, just paved the way for any other application of gene therapy into the brain to let us know if gene therapy can persist," she told the broadcaster. "It's a loss of information that would have been precious and cited for the years to come, for the centuries to come, because this is the one and only specimen, not just for Canavan, for any other gene therapy,"
A spokesperson for Children's Wisconsin said they were 'profoundly sorry' for the error.
"We were honored to support Ashtyn's family's wish for her legacy to help others. As we communicated to the family when this error was discovered, and reiterate now, 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,' they said in a statement.
'The availability of human tissue to support life-changing and lifesaving medical research is critical to offering hope to families. We take seriously our work to 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 again offer our most sincere regret and apology."
When questioned further by Fox 6, the hospital said they have a 'comprehensive process' to manage donated tissue, aspects of which were 'not followed,' leading to the error.
The Fellenz family have now hired an attorney to represent them, and would use any money to help with Canavan research.
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