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.
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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.
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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 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.
- 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.
