Family sues Children's Wisconsin after daughter's donated brain lost, keeps searching for cure

MILWAUKEE (CBS 58) — A Menomonee Falls family is suing Children's Wisconsin after their daughter's donated brain was thrown away.

Ashtyn Fellenz was diagnosed with Canavan disease when she was just a baby.

It's a rare disease where most don't live past 7-10 years old. However, Ashtyn would have turned 25 years old on Father's Day.

Her mother says losing her daughter was heartbreaking, but also losing the chance to make progress toward a cure is even harder.

"She had a beautiful soul, she touched a lot of people's lives," said Arlo Fellenz, Ashtyn's mother.

Ashtyn Fellenz passed away from Canavan disease, a rare genetic disorder that affects the brain's white matter, in December 2024.

"Ashtyn's family honored her wish to donate her tissue to research, ensuring her legacy will inspire and transform future therapies," said Dr. Paola Leone.

She lived to be 24 years old. Her mother contributes that to an experimental gene therapy she received at age three.

"After the gene therapy, there was improvement right away. She was able to focus on things hanging from the ceiling, and within a month or so she was having some hand and arm movement, but that was short-lived," said Fellenz.

From the moment Ashtyn was diagnosed, her family pushed for a cure.

"We knew her life was going to be short. I wanted to her to live a life that my husband and I would have no regrets that we gave her a full life," said Fellenz.

To give not just their daughter, but all children with the disease a chance for a better life.

"Being part of a study, you want to know what the results are on that. We touched base about that prior to knowing that Ashtyn was going to pass away, to react to that. Then we had everything ready and lined up," said Fellenz.

Her mother didn't want to talk about the current lawsuit.

"Let's just say there's a huge loss. The brain can tell stories, the brain can have information to help researchers discover whether it was good or bad, what was not good, what they need to do better," Fellenz explained.

She says she will continue to search for a cure and honor her daughter's legacy.

"The goal is to give these other children the best life possible too. I will do that for the rest of my life, what's left of it," said Fellenz.

The family thought Ashtyn's brain was donated after her death, but it never made it to a research facility. Instead, it was mistakenly thrown out.

CBS 58 reached out to Children's Wisconsin. They said in a statement:

"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."