Abbey Barrett\u2019s parents initially noticed something might be wrong with their daughter in the year leading up to her diagnosis.<\/p>\n
\u201cWe noticed she was getting more tired than normal, and she was having learning difficulties at school,\u201d her mom, Justine Barrett, 43, told PEOPLE.<\/p>\n
\u201cShe then developed hand tremors<\/a> that were dismissed by our local GP \u2014 put down to genetics because Abbey\u2019s paternal grandmother has hand tremors. Then Abbey started having some vision issues, for example, double vision after reading a lot. It was through the optometrist that her situation escalated to an ophthalmologist and eventually an MRI,\u201d she continued.<\/p>\n Courtesy of Justine Barrett<\/p>\n Abbey, then 10, was diagnosed with a brain tumour in June 2023. She died almost a year later in June 2024.<\/p>\n Justine explained that Abbey\u2019s cancer was due to a \u201cgenetic glitch.\u201d<\/p>\n \u201cThe tumor was the size of her fist, wrapped around her brain stem,\u201d she explained. \u201cSoon 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<\/a>.”<\/p>\n Abbey had an \u201cintense year of treatments,\u201d which included \u201cchemotherapies, radiotherapy and a heap of alternative and supportive therapies.\u201d<\/p>\n Courtesy of Justine Barrett<\/p>\n \u201cThe radiation shrunk her down and steroids puffed her up. 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. She died at home, in my bed, in my arms, a year after her diagnosis,\u201d Justine said.<\/p>\n Never miss a story \u2014 sign up for PEOPLE’s free daily newsletter<\/a> to stay up-to-date on the best of what PEOPLE has to offer\u200b\u200b, from celebrity news to compelling human interest stories.<\/p>\n \u201cShe knew she was dying,\u201d the mother said. \u201cAlong 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\u2019s full of loaded fruit trees and puppies \u2014 the \u2018dog park\u2019 we called it. We also decided that time doesn\u2019t exist in the dog park, and that she wouldn\u2019t even get a chance to miss us before we were all there with her. I hope so much that is true.\u201d<\/p>\n Courtesy of Justine Barrett<\/p>\n Justine went on to say that there are several key things she has learned following her family\u2019s experience with losing Abbey \u2014 specifically, things she would like to see changed about the way childhood terminal illness is handled within the medical system.<\/p>\n \u201cOne of the challenges with child illness is that it\u2019s an incredibly sensitive topic. And at times, we felt that medical staff avoided telling us things that were too hard. 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,\u201d she explained.<\/p>\n \u201cThat was something I found out via Google<\/a>. Doctors always say, don\u2019t 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,\u201d she added.<\/p>\n Justine also shared that most people do not realize the immense \u201cburden of care\u201d placed on parents and guardians in \u201can already terrifying situation.\u201d She said that sometimes she and her husband were faced with the near-impossible decision of taking Abbey to the hospital in the middle of the night \u2014 where hospital staff would be sparse and Abbey would be \u201cin terror\u201d \u2014 or allow her to continue to sleep comfortably in her bed and hope she would be okay.<\/p>\n She added that she also wished she had been made aware of the concept of \u201cdeath doulas\u201d<\/a> (also known as \u201cend of life doulas”) \u2014 professionals who offer non-medical, practical support to families during end-of-life care \u2014 sooner.<\/p>\n Courtesy of Justine Barrett<\/p>\n \u201cWe had a great pediatric palliative care doctor hold our hands to some extent, but, naturally, the practical decisions around Abbey\u2019s death were left to us. As though we knew what we were doing! \u2026 We were given a list of funeral homes in the area and told to give each one of them a call to find out who suited us best. I can tell you, at that point in time I did not have the capacity to do that,\u201d she recalled.<\/p>\n Finally, Justine said she now believes that medically-assisted death<\/a> should be available to terminally ill children.<\/p>\n \u201cIt seems incredibly unfair that we can put our pets and adults \u2018out of their misery,\u2019 yet children still don\u2019t get that privilege. I understand that it’s complex, but the last 10 hours of Abbey\u2019s life were the worst of my life. Listening to your child slowly drown in fluid building up in their lungs is a torture that I wouldn\u2019t wish upon anyone,\u201d she said.<\/p>\n Justine said that she, her husband and their surviving two daughters, ages 16 and 15, are now left facing a lifelong journey with grief.<\/p>\n \u201cLosing Abbey felt like going from a world of color to a world of black and white. Everything else is still where we left it, but nothing has the same shine to it anymore. It\u2019s harder to find joy. We are still a family of five, but we exist across two different realms, and we still feel so out of balance. I don\u2019t think this will ever change,\u201d she explained.<\/p>\n \u201cThe grief is not just for the loss of Abbey \u2026 my other girls lost their childhood the day she was diagnosed. They were a trio of sisters, the \u2018silly sisters.\u2019 That\u2019s what they used to call themselves, but not anymore,\u201d she said.<\/p>\n Justine is now on a mission to shine a light on both brain cancer and child loss<\/a> so that one day others might not have to experience what she and her family did.<\/p>\n \u201cBrain cancer is the disease that kills the most kids in Australia. We are failing our kids. I feel like I failed Abbey. It\u2019s not logical, but I\u2019m her mom. I am supposed to raise her,\u201d she said.<\/p>\n \u201cI would love to see us put some serious investment into advancing brain cancer treatments. 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,\u201d she added.<\/p>\n![\"Abbey](\"https:\/\/www.newsbeep.com\/ca\/wp-content\/uploads\/2026\/02\/171099bdebc5a26601504beb4f6027bf.jpeg\"\/)
Abbey Barrett in the hospital <\/p>\n![\"Abbey](\"https:\/\/www.newsbeep.com\/ca\/wp-content\/uploads\/2026\/02\/a879758c311dd7754d79e2e2d593a827.jpeg\"\/)
Abbey Barrett in the hospital during brain cancer treatment <\/p>\n![\"Abbey](\"https:\/\/www.newsbeep.com\/ca\/wp-content\/uploads\/2026\/02\/41eb2f730c24c0eb71f00b2fe5daa455.jpeg\"\/)
Abbey Barrett before her diagnosis <\/p>\n![\"Abbey](\"https:\/\/www.newsbeep.com\/ca\/wp-content\/uploads\/2026\/02\/e6b55a37a95a026dd8e6fab3bdce47c3.jpeg\"\/)
Abbey Barrett <\/p>\n