Girl, 11, Died of Brain Cancer. This Is What Her Parents Wished They Had Known Sooner

A family in Australia is speaking out after losing their 11-year-old daughter to brain cancer, hoping to raise awareness about the disease — and about what they wish they’d understood earlier about caring for a terminally ill child.

In the year before their daughter’s diagnosis, Abbey Barrett’s parents began to notice subtle but persistent changes.

“We noticed she was getting more tired than normal, and she was having learning difficulties at school,” her mother, Justine Barrett, 43, said.

Justine said Abbey later developed hand tremors, which were initially dismissed by their local doctor and attributed to family history because Abbey’s paternal grandmother also had tremors. Over time, more symptoms appeared — including vision problems.

“Then Abbey started having some vision issues, for example, double vision after reading a lot,” Justine said. “It was through the optometrist that her situation escalated to an ophthalmologist and eventually an MRI.”

Abbey, who was 10 at the time, was diagnosed with a brain tumor in June 2023. She died nearly a year later, in June 2024.

Justine said the cancer was linked to what she described as a “genetic glitch.”

“The tumor was the size of her fist, wrapped around her brain stem,” she said. “Soon after, we found out she had Li-Fraumeni syndrome, meaning every cell in her body was missing a vital checkpoint for programming cell death if uncontrolled growth was occurring. This meant Abbey was destined to have cancer at a young age. Normally, Li Fraumeni is a genetic condition. For Abbey, it was an incredibly unlucky genetic glitch.”

The months that followed were relentless. Justine said Abbey endured intensive treatment, including chemotherapy and radiotherapy, along with supportive therapies.

“The radiation shrunk her down and steroids puffed her up,” she said. “During that time, we almost lost her twice. It was an incredibly difficult year of treatments for Abbey. Over that time, she gradually slipped further and further away.”

Abbey died at home.

“She died at home, in my bed, in my arms, a year after her diagnosis,” Justine said.

Justine also spoke about the emotional weight of explaining death to a child who understands what is happening.

“She knew she was dying,” she said. “Along the way, I had to have conversations with her about what that meant. We decided that when you die, you go to a park that’s full of loaded fruit trees and puppies — the ‘dog park’ we called it. We also decided that time doesn’t exist in the dog park, and that she wouldn’t even get a chance to miss us before we were all there with her. I hope so much that is true.”

Now, Justine says she hopes their family’s experience can help change how childhood terminal illness is handled — especially in communication, support, and preparation.

“One of the challenges with child illness is that it’s an incredibly sensitive topic,” she said. “And at times, we felt that medical staff avoided telling us things that were too hard.”

She said early discussions with specialists explained the diagnosis and the genetic condition, but left out what she believes families also need to hear plainly: prognosis.

“The initial conversations with oncologists told us information like Abbey had a brain tumor and had Li-Fromeni syndrome, but withheld information like the fact that she would likely die within 18 months,” she said.

“That was something I found out via Google,” she continued. “Doctors always say, don’t Google it, but what choice did I have? I understand that these things are hard to talk about, everybody is different and there are many unknowns, but I think those brutal and honest conversations form part of the duty of care.”

Justine also described the “burden of care” that families carry — not only emotionally, but practically — while trying to make the best decisions in frightening moments. She recalled facing agonizing choices at night: take Abbey to a hospital where staffing could be limited and the experience could terrify her, or keep her comfortable at home and hope she would be okay until morning.

She also said she wishes someone had introduced the family earlier to “death doulas” (also known as “end of life doulas”) — professionals who provide non-medical, practical help to families navigating end-of-life care.

“We had a great pediatric palliative care doctor hold our hands to some extent, but, naturally, the practical decisions around Abbey’s death were left to us,” she said. “As though we knew what we were doing!”

Justine described being handed a list of funeral homes and told to call around to decide which was the right fit.

“I can tell you, at that point in time I did not have the capacity to do that,” she said.

She also said she now believes medically-assisted death should be available to terminally ill children — a view shaped by what she witnessed in Abbey’s final hours.

“It seems incredibly unfair that we can put our pets and adults ‘out of their misery,’ yet children still don’t get that privilege,” she said, acknowledging the complexity. She described Abbey’s last 10 hours as excruciating for both child and parent.

Justine and her husband are raising their two surviving daughters, ages 16 and 15, while living with a grief they say has permanently altered their world.

“Losing Abbey felt like going from a world of color to a world of black and white,” she said. “Everything else is still where we left it, but nothing has the same shine to it anymore. It’s harder to find joy.”

She also spoke about the ripple effect on siblings.

“The grief is not just for the loss of Abbey … my other girls lost their childhood the day she was diagnosed,” she said. “They were a trio of sisters, the ‘silly sisters.’ That’s what they used to call themselves, but not anymore.”

Today, Justine says she is determined to shine a light on both brain cancer and child loss — with the hope that other families might be spared the same pain.

“Brain cancer is the disease that kills the most kids in Australia,” she said. “We are failing our kids. I feel like I failed Abbey. It’s not logical, but I’m her mom. I am supposed to raise her.”

“I would love to see us put some serious investment into advancing brain cancer treatments,” she added. “Brain cancer is extremely difficult to treat for a number of reasons. But if we can crack that code, I think the flow on effects to other cancers would be huge.”