'There's no accountability': Donated brain thrown out, Children's Wisconsin lawsuit dismissed
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A Menomonee Falls family sued the hospital after the hospital accidentally threw away their daughter's brain, meant for research.
"Now all that research from Ashtyn's brain is all gone. We are just going to have to learn the hard way instead of making life better for other children," said Arol Fellenz, Ashtyn's mom.
Ashtyn Fellenz was diagnosed with Canavan disease as a baby. At just 3 years old, she received a revolutionary gene therapy treatment.
"Those genes were still working in her body all her life, and that helped her have better quality," said Fellenz.
Canavan is a rare disease. Most don't live past the age of 10; Ashtyn passed away at 24.
Her mom, Arol, says the scientific knowledge gained from her brain could have helped ongoing research to find a cure, and not only for Canavan disease.
"That would also help Alzheimer, Parkinson's and any of the other diseases related to myelin," said Fellenz.
The Fellenz family was in court Monday, with Children's Wisconsin, to determine if they had a valid case.
"It was dismissed because the judge placed the brain as an organ, and his ruling on organs is that we signed a document that once we turned over the organ, that they can do whatever they want with it," said Fellenz.
Fellenz says there needs to be accountability so no one else has to experience this with organ donation.
"There's no responsibility. There's no accountability on the hospital's part and that's got to change," said Fellenz.
Dr. Paola Leone has been working with Canavan patients for nearly three decades.
"The sample is irreplaceable. We will never have the information, unfortunately. The scientific loss is immense," said Dr. Leone.
She performed Ashtyn's gene therapy when she was a baby.
"This would have been the only proof of presence or absence or biodistribution of a gene that was administered through gene therapy 21 years ago," said Dr. Leone.
Fellenz says while the case was dismissed, she's going to continue to fight.
"I didn't get any of my answers and I still want my answers. And I'm not going to let them think that this is going away," said Fellenz.