A children's hospital in Wisconsin said that it accidentally thrown away the brain of a young woman that was donated for research. The woman had pioneering gene treatments for a rare degenerative disease, and researchers hope that studying her brain would give them invaluable data.
Ashtyn Fellenz died at the age of 24 on December 5, 2024. As a child, she was diagnosed with Canavan disease, a rare genetic disorder causing the degeneration of the coating that protects the nerves and a loss of white matter in the brain, according to Fox 6.
Usually children who suffer from the disease gradually lose the ability to move their muscles and are effectively locked up 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, Fellenz underwent an experimental surgery in which a functional gene was injected into her brain, in the hope that it would move the defective. Although it doesn't heal her illness, the hair has bought her a decade for life.
Dr. Paola Leone, a professor in cell biology at Rowan University, requested that the brains of Fellenz are kept after her death, in the hope that the priceless data could offer both the disease and the body's response to her experimental treatment.
Children's hospital of the Milwaukee campus in Wisconsin. The hospital accidentally thrown away the brain of Ashtyn Fellenz, a 24-year-old woman who died of Canavan Diease. The brain was intended to be donated for scientific research that scientists could have helped the disease and groundbreaking genetic treatments that the woman had received better when she was a child. (Google Maps)
While 16 other children also received similar treatment, the circumstances of her death made her brain ideal for conservation.
According to Leone, most canavan patients die in their homes and their brain tissues have been broken off by the time they can be automated correctly.
Goedenz, however, died in the Wisconsin children's hospital, where doctors could quickly work 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 after her death, according to her parents, Scott and Arlo Fellenz.
“There was no doubt that we should do that,” Scott said. “It was a large part of her legacy.”
Unfortunately, the secrets of the brain of Fellenz will never be discovered.
When she died on December 5, Officials of Children's Wisconsin decided that an earlier donation signed by her parents was outdated and that they should fill in another before the brain could be sent to Living Biobank in the children's hospital in Dayton, Ohio.
Although Leone Children's Wisconsin provided the consent form, a month has passed and the monster was still not sent.
On January 13, more than a month after the death of Fellenz, Dr. Lauren Parsons, director Pathology at Children's Wisconsin, wrote an e -mail to Leone who thanked her for her “patience” and noticed that “holidays and some leadership transitions” had tied up the staff, Fox 6 said.
For another two months passed without the brain being sent, Leone said, adding that many of her e -mails that questioned the hold -up remained unanswered.
Scott Fellenz told the broadcaster that Parsons is literally haunted [Leone] for two months. “
In March Arlo Fellenz called the hospital and demanded answers. Her call was sent back from the employees of the “Grief Services” hospital, who wanted to set up a meeting. She waved the meeting and demanded that they told her what to say by phone.
The hospital then told the family that they had accidentally 'removed' the brain of Fellenz.
“They threw her brain away. How can you do that with a brain? ” Said Arlo during an interview with Fox 6.
Half of the Fellenz brain was eventually sent to Ohio, but Leone was the most interested in the information that the other half – half that the experimental injection had not received – 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 with genes suffer from conditions.
“This would have just led, just cleared the way for any other application of gene therapy in the brain to let us know if gene therapy can continue to exist,” she told the broadcaster. “It is a loss of information that would have been expensive and cited for the coming years, for the coming centuries, because this is the only one copy, not just for Canavan, for any other gene therapy,” “
A spokesperson for Children's Wisconsin said they were “deep” for the mistake.
“We were honored to support Ashtyn's wish for her inheritance to help others. While we communicated to the family when this error was discovered and repeated our team that this happened, and we continue to take steps to strengthen our protocols to ensure that this does not resume again,” they said in a statement.
“The availability of human tissue to support life -changing and life -saving medical research is of crucial importance to offer hope to families. We take our work seriously to support research through the right collection, storage and use of tissue.
When Fox 6 was questioned further, the hospital said they have an 'extensive process' to manage donated tissue, of which aspects were not followed, which led to the error.
The Fellenz family has now hired a lawyer to represent them and would use money to help with Canavan research.
