A Children’s Hospital in Wisconsin said she was accidentally thrown into the brain of a young woman who was donated for research. The woman had undergone pioneer gene treatments for a rare degenerative disease and researchers hoped to study her brain to provide them with invaluable data.
Ashtin Felenz died at the age of 24 on December 5, 2024. As a child, she was diagnosed with Canavan’s disease, a rare genetic disorder that causes degeneration of the coating that protects the nerves and loss of white substance in the brain, according to FOX 6.
Usually, children suffering from the disease progressively lose their ability to move their muscles and effectively lock themselves in their own bodies. Without treatment, most children with the disease die before the age of 10.
In 2003, when she was three years old, Fentenz underwent an experimental surgery in which they saw a functional gene injected into her brain in the hope that she would displace the defective. Although she does not cure her illness, it bought her life for a decade.
Dr. Paola Leone, Professor of Cell Biology at Rowan University, has asked Felenz’s brain to be preserved after her death, hoping that this could provide invaluable data on both the disease and the reaction of the body to her experimental treatment.
Children’s Hospital in Campus in Milwaukee in Wisconsin. The hospital accidentally dumped Ashtin Felenz’s brain, a 24-year-old woman who died from Canavan Diise. The brain had to be donated to research that could help scientists better understand the disease and pioneering genetic treatments that a woman received when she was a child. (Google Maps)
While 16 other children also received similar treatment, the circumstances of her death made her brain particularly ideal for conservation.
According to Leone, most patients with Canavan die in their homes and their brain tissues break down until they can be properly autopted.
However, Folinz died at Wisconsin Children’s Hospital, where doctors can work quickly to save her brain.
“The script was perfect,” Leone told Fox 6. “She was in the hospital. The dry ice was there, ready to go.”
Brain donating has always been a plan after her death, according to her parents, Scott and Arlo Flenz.
“It was no doubt that we had to do it,” Scott said. “It was a big part of her inheritance.”
Unfortunately, the secrets of Fentenz’s brain will never be revealed.
When she died on December 5th, employees in the children’s Wisconsin decided that a previous consent form for donation signed by her parents was outdated and that they would have to fill in another before the brain was sent to live Biobank at the Children’s Hospital in Dayton, Ohio.
Although Leone provides the children Wisconsin the consent form, it has been a month and the sample has not yet been sent.
On January 13, more than a month after the death of Fentenz, Dr. Lauren Parsons, Director of Pathology in Children’s Wisconsin, wrote an email to Leone, thanked her for her “patience” and noted that “Holidays and some leadership transitions” maintained the binding staff, according to Fox 6.
Two more months passed without the brain sent, Leone said, adding that many of her emails questioning the detention were left unanswered.
Scott Folintz told the television operator that Parsons “literally ghostly [Leone] For two months. “
In March, Arlo Folinz called the hospital and wanted answers. Her call was returned by workers at the Grief Services Hospital who wanted to organize a meeting. She removed the meeting and asked them to tell her what they had to say on the phone.
At that time, the hospital told the family that they accidentally “had” with the brain of Felenz.
“They dumped her brain. How can you do this with a brain?” Arlo said during an interview with Fox 6.
Half of Fentenz’s brain was eventually sent to Ohio, but Leone was most interested in the information that the other half – half that did not receive the experimental injection – can reveal.
Fentenz’s father said he had the feeling that he had lost his daughter again. For Leone, loss is also a loss of potential knowledge that could help people suffering from gene conditions.
“It would just lead, just pave the way for any other use of gene therapy in the brain to let us know if gene therapy can continue,” she told the television operator. “This is a loss of information that would be valuable and cited for the coming years, for the coming centuries, because it is the only copy, not just for Canava, for any other gene therapy,” “
A spokesman for the children’s Wisconsin said they “deeply regret” the mistake.
“It was an honor for us to support the desire of Ashtin’s family for her inheritance to help others. While we were communicating to the family when this mistake was discovered, and again we repeated our team deeply regret that it happened and we continue to take our protocols to help you do not work again.”
“The presence of human tissue to help change life and life-saving medical research is crucial to offering the hope of families. We take our work seriously to support research through proper collection of fabrics, preservation and use. We are deeply grateful for the life of Ashin and for the intercession and the care of her family.
When questioned further than FOX 6, the hospital said they had a “exhaustive process” to manage donated tissue, aspects of which “are not respected” leading to the error.
The Ferlanz family has already hired a lawyer to represent them, and will use money to help Cananan’s research.