Latest news with #AshtynFellenz
The Independent
08-05-2025
- Health
- The Independent
A woman donated her brain so scientists could study a pioneering treatment. A laboratory accidentally threw it out
A children's hospital in Wisconsin said it accidentally disposed of the brain of a young woman that was donated for research. The woman had undergone pioneering gene treatments for a rare degenerative disease, and researchers hoped studying her brain would provide them with invaluable data. 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December 5, officials at Children's Wisconsin decided that a previous donation consent form signed by her parents was out of date and that they would need to fill out another before the brain could be shipped to Living BioBank at the Children's Hospital in Dayton, Ohio.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 before the brain sample was 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 told they that they had '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, aspect 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.
Yahoo
08-05-2025
- Health
- Yahoo
Donated brain thrown out; Children's Wisconsin 'profoundly sorry'
Yahoo is using AI to generate takeaways from this article. This means the info may not always match what's in the article. Reporting mistakes helps us improve the experience. Yahoo is using AI to generate takeaways from this article. This means the info may not always match what's in the article. Reporting mistakes helps us improve the experience. Yahoo is using AI to generate takeaways from this article. This means the info may not always match what's in the article. Reporting mistakes helps us improve the experience. Generate Key Takeaways The Brief Children's Wisconsin says it accidentally 'discarded' the frozen portion of a young woman's donated brain. Ashtyn Fellenz, who died in December, underwent pioneering gene therapy 21 years ago. The doctor who conducted the surgery in 2003 said the lost brain tissue was vital for ongoing gene therapy research. WAUWATOSA, Wis. - When 24-year-old Ashtyn Fellenz died on December 5, 2024, the dry ice was waiting. She was already at Children's Wisconsin where a pathologist was prepared to carefully extract her brain and preserve it for future research. A 'tremendous' loss What we know By all accounts, the extraction of her brain was flawless. It was separated into hemispheres - half of it chemically fixated in a formalin solution, the other half segmented and rapidly frozen. The plan was to quickly ship both halves to a Living BioBank at Children's Hospital in Dayton, Ohio. Instead, the tissue sat in a Children's Wisconsin laboratory for months. Ashtyn Fellenz died on December 5, 2024, at age 24 Eventually, after internal administrative changes and a laboratory move, hospital officials discovered the frozen half of Ashtyn's brain had been accidentally "discarded." The discovery stunned not only the Fellenz family, but the researcher who had requested the brain be preserved – Dr. Paola Leone. "The loss is tremendous," Leone said. A silent life The backstory Ashtyn was born on June 15, 2000, apparently healthy. By six months of age, her parents knew something was seriously wrong. "She started missing milestones, not being able to lift up her head," said her father, Scott Fellenz. Ashtyn was diagnosed with Canavan Disease, a rare genetic disorder that causes degeneration of the protective coating around nerves and a loss of white matter in the brain. Children with Canavan progressively lose the ability to use their muscles and become trapped inside their own bodies, like a living rag doll. Without intervention, most children with the disease die before age 10. Just after her 3rd birthday, Ashtyn received gene therapy through a viral vector injected directly into her brain. The pioneering surgery was aimed at replacing the defective gene that causes Canavan disease with a functional gene. In 2003, Ashtyn underwent pioneering surgery to inject a functional gene into her brain in hopes of replacing the defective one. The experimental gene therapy did not cure the disease, but Dr. Leone said it improved her quality of life and helped her survive until age 24. "That sounds like a success," said FOX6 Investigator Bryan Polcyn. "It is a success," Dr. Leone replied. FREE DOWNLOAD: Get breaking news alerts in the FOX LOCAL Mobile app for iOS or Android Ashtyn never spoke a word in her life, but Dr. Leone said there was a treasure trove of information inside her brain. "In that silence, there was so much knowledge," the doctor said. A big part of her legacy What they're saying Asthyn was one of 16 children to get the experimental treatment, but Dr. Leone said she is one of the rare Canavan patients to have died under optimal circumstances for preserving her brain. "Most Canavan patients die at home," the doctor said. By the time their bodies are available for autopsy, the brain tissue has degraded significantly. Asthyn died at Children's Wisconsin. "The scenario was perfect," Dr. Leone said. "She was in the hospital. The dry ice was there, ready to go." Dr. Paola Leone, now a professor at Rowan University in New Jersey, performed the surgery in 2003. Ashtyn's family had long ago agreed to donate her brain for research. "I knew that's what we wanted to do," said Arlo Fellens, Ashtyn's mother. "It was no question that we had to do that," said Scott Fellenz, her father. "It was a big part of her legacy." Unexplained delays Timeline When Ashtyn died on Dec. 5, Children's Wisconsin determined that a previous consent form signed by her parents was outdated. Before the hospital could ship the brain to Ohio, they would need a new one. Dr. Leone sent the updated consent hours before boarding a flight to Wisconsin to deliver a eulogy at Ashtyn's funeral. "Her powerful voice encrypted in her DNA will deliver life-saving messages," Dr. Leone told a packed Pewaukee church, still believing the brain would soon be ready for her to evaluate. What happened next is detailed in a series of emails between Dr. Leone and a pathologist at Children's. "I mean, I gave the address, the FedEx number," Dr. Leone said. "Everything was ready to go." Dr. Leone flew to Wisconsin to delivery a eulogy at Ashtyn's funeral on December 7, 2024 More than a month passed without any shipment. On Jan. 13, Dr. Lauren Parsons, Director of Pathology at Children's Wisconsin, wrote an email thanking Dr. Leone for her "patience," adding that "holidays and some leadership transitions" had kept her busy. Dr. Parsons wrote, "I fully endorse sending the brain" to Ohio. But two more months passed – still nothing. "We follow up with emails, no reply," Dr. Leone said. "Other emails, no reply." "She literally ghosted her for two months," Scott Fellenz said. SIGN UP TODAY: Get daily headlines, breaking news emails from FOX6 News Finally, in March, Arlo Fellenz contacted the hospital for answers. She received a call back from "grief services," asking to set up a meeting. Arlo knew the news would not be good, so she demanded to hear about it over the phone. "They regret to tell me it was, her brain was disposed of," Arlo recalled hearing "They threw your daughter's brain away," said FOX6 Investigator Bryan Polcyn. "Yeah, that's what it comes down to," Arlo said. "They tossed out her brain. How can you do that with a brain?" Actually, half of Ashtyn's brain was eventually shipped to Ohio – the fixed portion. But it was the frozen half that was inadvertently thrown away. Dr. Leone said that was the most valuable part for research purposes. "And I was like, 'How could you discard something so valuable?,' Arlo Fellenz said. "And they kept just saying, 'Well we're sorry. We just, it was just disposed of, we can't tell you anything more.'" "It was literally like losing Ashtyn all over again," Scott Fellenz said. It's irreplaceable Dig deeper For Dr. Leone, the loss is both personal and professional. "When Ashton passed away we were all heartbroken," the doctor said. Beyond the emotional ties she had to Ashtyn, Dr. Leone said the post-mortem examination of her brain would have offered unparalleled insights into how the gene therapy worked inside Ashtyn. Arlo and Scott Fellenz have hired attorney James Gende to represent them. "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," the doctor said. Dr. Leone said it would most likely have resulted in a "high-impact" publication that could have served future research. "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," the doctor said. "It's irreplaceable." We are 'profoundly sorry' The other side Children's Wisconsin declined a request for an on-camera interview. In a statement emailed to FOX6 Investigators, a spokesperson writes: "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. 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." After receiving the statement, FOX6 Investigators submitted 16 written questions to Children's Wisconsin seeking further detail. The hospital responded with this: "As this situation is under the threat of litigation, and due to patient privacy matters, we are unable to respond in detail to many of your questions. We share the following in the hope it provides additional context: We have comprehensive processes in place to properly manage tissue donated for research purposes. Aspects of those processes were not followed, which caused this error. We realized this error as the sample was being prepared for shipment. While one portion of the tissue remained, it became apparent that the separate frozen portion of the tissue was erroneously disposed of. To your question regarding timing, it appears several matters created the gap in time from when the autopsy occurred to when the tissue was approved for shipment (which is when we realized a portion was accidentally disposed of). Those factors included time needed to secure and review correct consent forms from the receiving institution, the move of the lab and various scheduling matters. The change in lab leadership had no bearing on this matter. 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. We have taken several specific steps to learn from this, including:The team has participated in re-education on our matter is being prioritized as it proceeds through our internal quality review the quality review process identify other areas for improvement, we will address those improvements with the seriousness they deserve. The team has participated in re-education on our processes. This matter is being prioritized as it proceeds through our internal quality review process. Should the quality review process identify other areas for improvement, we will address those improvements with the seriousness they deserve. This was a very unique situation. We cannot recall any previous situation where organ tissue donated for medical research was erroneously discarded." Lawsuit imminent What's next The Fellenz family has hired attorney James Gende to represent them. If Asthyn's brain can't help with Canavan research, her family said perhaps money will. "Then Ashtyn can have some meaning in her life after her death." The family has set up a separate fund at St. Bartholomew's Episcopal Church in Pewaukee. According to the website, Ashtyn's Hope supports families and children with Canavan Disease with medical equipment.
