The parents of 11-year-old Aiden Bartley, who died after battling a form of pancreatic cancer rarely found in children, have donated his tumor to research in hopes that the disease will be studied and a cure found before another child or adult succumbs to the illness.

Aiden Bartley, who died Tuesday, Sept. 17, was 9 when he was diagnosed with metastatic pancreatic adenocarcinoma, his mother, Megan Bartley, said.

“Never in a million years did I think this was going to happen,” she said.

The disease is historically found in adults, she said.

When Aiden first complained of an upset stomach one week in the fall of 2022, Bartley said she suspected he might have the flu. She then wondered if the stomach pain could be related to anxiety or nerves because of school starting.

Knowing her son had experienced acid reflux as a baby, she made an appointment with a gastrointestinal specialist. She said Aiden then turned jaundiced.

“I’d never seen anybody so yellow in my life,” Bartley said.

The doctor advised her to bring Aiden to the emergency room.

Ten days later, there was a diagnosis.

“They went from, ‘Oh, its liver failure,’ to — ‘It’s pancreatitis’ — to acute pancreatitis, to, ‘Ok, it’s cancer, but it’s the treatable kind,’” she said. “Then they came to us at 10 o’clock at night and said, ‘It’s nothing like we’ve ever seen.’”

The doctors the Bartleys worked with said they had never seen a child diagnosed with this form of pancreatic cancer, Aiden’s mother said.

Children’s Hospital of Pittsburgh was not equipped to handle the biopsy, she said.

With Aiden’s complex diagnosis, seeking treatment was complicated. Bartley said the family traveled every week for Aiden to receive care at the Chan Soon-Shiong Institute for Medicine in California.

Bartley described her son as “a fighter” in the face of the aggressive disease.

“He fought hard,” she said.

“He was a fighter who persevered and took the cancer with him,” she said. “(Cancer) doesn’t define who he is or was.”

Bartley said she and her husband, Mike, made the “united decision” to donate Aiden’s tumor to the Cleveland Clinic Cancer Center.

“That was a very, very rough decision,” Bartley said.

While it won’t bring her son back, she said she and her husband hope their decision can make a difference for someone else.

“If there is ever another child — or adult — diagnosed, maybe they have the opportunity to find a cure before then,” she said.

Aiden is the brother of Jack, 4, and Carmella, 6, who populated his hospital room with drawings before their older sibling would go into surgery.

“We told them Aiden is no longer with us in this world,” Bartley said.

“Jack will tell you — if you ask him where Aiden lives — he says, ‘In my heart,’” she said.

Aiden was “a typical child,” Bartley said.

He played baseball and loved playing dek hockey, like his father and uncle, she said, starting dek hockey at 3 years old.

“He played his video games. He played with his friends. He went to school,” Bartley said. “He excelled in academics. He liked to be with his cats.”

“He was full of life, and was so kind and loving,” she said. “He definitely didn’t deserve this. Nobody does.”

“I would have never even thought this was the way his life was going to end,” she said.

Bartley said Aiden’s YouTube videos reflected his personality. He was funny and well-spoken, she said. Despite having a speech impediment when he was younger, he sometimes sounded just like an adult.

Aiden could also be very blunt, his mother said.

“He told you how it was,” she said. “When he was first diagnosed, he told the nurse, ‘Do you know what they call people who take this much blood? Murderers.’”

Before he passed, Bartley said his two best friends visited him. She said she asked them to speak at the funeral.

“I don’t think he ever knew he was going to die,” she said, noting that at the end of his life he experienced liver failure and renal failure. “Except this last week, in the ICU, he looked at me and said, “Mommy, I’m bad. Mommy, I’m bad.”

“Right before he died, I held his hand in my hand,” she said. “His face was against mine. I said, ‘Buddy, it’s OK. Mommy and Daddy will be OK. You can go.”

Funeral home visitations will span two days, Bartley said, in anticipation of the number of people she said she expects will want to pay their respects.

Since Aiden’s diagnosis, the Butler community has rallied around the family, organizing events in support of the family. A candlelight vigil, organized by Riding for the Cure, took place Wednesday night, Sep. 18. A bike send-off is planned for the funeral procession, she said.

Bartley said those who wish to donate to the family can do so on GoFundMe. The fundraiser by Connie Wetzel, Aiden’s grandmother, and the page can be found by searching for “Aiden’s Journey“ on the website. Contributions to charity made in Aiden’s memory can be made to Jamie’s Dream Team by calling 412-979-0470, she said.

“We’re just getting through this day by day,” Bartley said Friday. “Yesterday, I wrote his obituary. It was the hardest thing. How do you summarize how much he meant not only to us, but to everyone, in just a paragraph?”

Bartley said she will remember her son the same way as the first time she held him when he was born. Aiden was a happy baby, she said; he is the first grandchild, her firstborn.

Aiden’s obituary appears in the Sunday, Sept. 22 edition of the Butler Eagle.