A children's hospital in Wisconsin said he accidentally eliminated the brain of a young woman who was Given for research. The woman had undergone pioneer genetic treatments for a rare degenerative disease, and the researchers hoped that the study of her brain would provide them with invaluable data.
Ashtyn Fellenz died at the age of 24 on December 5, 2024. As a child, she was diagnosed with a Canavan disease, a Rare genetic disorder This causes the degeneration of the coating that protects the nerves and a loss of white matter in the brain, According to Fox 6.
As a rule, children suffering from the disease gradually lose the ability to move their muscles and effectively lock themselves in their own body. Without treatment, most children with disease die before the age of 10.
In 2003, at the age of three, Freelenz underwent experimental surgery that saw a functional gene injected into his brain, in the hope that he would move the defective gene. Although he did not cure his illness, it bought him a decade of life.
Dr. Paola Leone, professor of cell biology at Rowan University, asked that Feelenz's brain be kept after his death, hoping that he could provide invaluable data on the disease and the body's response to his experimental treatment.
Children's Hospital of the Wisconsin Milwaukee campus. The hospital accidentally threw the brain of Ashtyn Fellenz, a 24 -year -old woman who died from Canavan Drease. The brain was to be given for scientific research that could have helped scientists better understand the disease and pioneering genetic treatments that women had received when she was a child. (Google Maps)
While 16 other children have also received a similar treatment, the circumstances of his death made his brain particularly ideal for conservation.
According to Leone, most Canadian patients die in their homes and brain tissue deteriorate when they can be properly autopsied.
Freelenz, however, died at the Wisconsin children's hospital, where doctors could work quickly to save his brain.
“The scenario was perfect,” Leone told Fox 6. “She was in the hospital. The dry ice was there, ready to leave.”
According to his parents, Scott and Arlo Feelenz have always donated the brain after his death.
“There was no doubt that we had to do it,” said Scott. “It was a large part of his inheritance.”
Unfortunately, Fellenz's brain secrets will never be discovered.
When he died on December 5, Children's Wisconsin officials decided that a previous donation consent form signed by his parents was exceeded and that they should fill another before the brain could be shipped to live Biobank at the Dayton Children's Hospital Ohio.
Although Leone provided the Wisconsin of children with the consent form, a month has passed and the sample had still not been sent.
On January 13, more than a month after the death of Feelenz, Dr. Lauren Parsons, director of the pathology at Children's Wisconsin, wrote an email in Leone thanking her for her “patience” and noting that “the holidays and certain leadership transitions” had kept the staff attached, according to Fox 6.
Two more months have passed without the brain being sent, said Leone, adding that many of his emails questioning the appeal have been left unanswered.
Scott Fellenz told the diffuser that Parsons “literally ghosts (Leone) for two months”.
In March, Arlo Feelenz called the hospital demanding responses. His call was returned from workers in the “mourning services” of the hospital, who wanted to organize a meeting. She gave the meeting and demanded that they tell her what they should say by phone.
The hospital then told the family that they had accidentally “eliminated” Feelenz's brain.
“They threw his brain. How can you do that with a brain?” Arlo said in an interview with Fox 6.
Half of Fellenz's brain was finally dispatched to Ohio, but Leone was most interested in the information that the other half – half that had not received experimental injection – could reveal.
The father of Fellenz said he had the impression that he had lost his daughter again. For Leone, the loss also represents a potential loss of knowledge that could have helped people with genetic conditions.
“It would have just led to, just opened the way to any other application of gene therapy in the brain to let us know if gene therapy can persist,” she told the diffuser. “It is a loss of information that would have been precious and cited for the years to come, for the centuries to come, because it is the only and the only specimen, not only for Canavan, for any other gene therapy”, “
A spokesperson for Children's Wisconsin said they were “deeply sorry” for the error.
“We were honored to support the wish of Ashtyn's family for their inheritance to help others. As we have communicated to the family when this error was discovered, and reiterate now, our team is deeply sorry that it happened, and we continue to take measures to strengthen our protocols to ensure that this does not happen,” they said in a press release.
“The availability of human fabrics to support medical research that changes life and vital is essential to offer hope to families. We take our work seriously to support research through a collection, storage and appropriate use. We are deeply grateful to Ashtyn's life and for the defense and care of his family, and once again our sincere regrettants and apologies. ”
Questioned further by Fox 6, the hospital said they had a “complete process” to manage the given tissues, whose aspects were “not followed”, leading to error.
The Feelenz family has now hired a lawyer to represent them and would use money to help Research on Canavan.
