![\""In](\"https:\/\/www.newsbeep.com\/uk\/wp-content\/uploads\/2026\/05\/0_image00003jpeg.jpg\")
<\/p>\nMum Amanda Axiak lost her 11-year-old daughter last year<\/p>\n
“In her short final days, Alicia remained her selfless, funny, loving self, comforting other children”(Image: Amanda Axiak)<\/p>\n
A heartbroken mum is sharing the story of how she lost her 11-year-old daughter to an aggressive brain tumour<\/a> just 15 days after the first symptoms<\/a>. She is now calling on officials to take urgent, transformative action to change outcomes for brain tumour patients.<\/p>\n Amanda Axiak, from Caerphilly in Wales, lost her youngest child, Alicia-Adele, to an inoperable and incurable diffuse midline glioma<\/a> (commonly known as a DIPG). One in three children who die of cancer is killed by a brain tumour.<\/p>\n According to Brain Tumour Research<\/a>, brain tumours are the leading cause of cancer death in children and adults under the age of 40 in the UK. In England, you are four times less likely to survive five years following a brain tumour diagnosis<\/a> compared to the average for all cancers.<\/p>\n Amanda hopes that sharing her daughter’s story will help to highlight the desperate situation that brain tumour patients face. Alicia, a trophy-winning dancer and gymnast, and keen netball player and swimmer, woke on April 10, 2025, with a numb arm.<\/p>\n Within hours, the numbness had spread to her face and leg. After speaking to the GP who suspected a stroke, Amanda rushed her to A&E.<\/p>\n Amanda is backing calls by the charity Brain Tumour Research(Image: Amanda Axiak)<\/p>\n Just two days later, an MRI scan revealed the devastating diagnosis of an inoperable and incurable DIPG, which typically has a survival prognosis of eight to 12 months and is the leading cause of brain tumour deaths in children. Alicia passed away on April 25, 2025, just 13 days after diagnosis and only 15 days after her first symptoms.<\/p>\n Amanda, 46, said: “It was the worst day of my life. I couldn\u2019t take it in. It felt like my world<\/a> had ended. Before Alicia\u2019s diagnosis, I had never heard of a diffuse midline glioma. Shockingly, there has been no change in treatment for decades.<\/p>\n “I know every mum says this, but Alicia really was the perfect child. She had a heart of pure gold and loved other children, always wanting to \u2018mummy\u2019 them.”<\/p>\n Alicia was a trophy-winning dancer and gymnast(Image: Amanda Axiak)<\/p>\n Alicia was a much-loved daughter and sister to her three elder brothers, Lloyd, Llewellyn and Llewys. Even in the hospital, during her final days, her instinct to care for others never left her.<\/p>\n “In her short final days, Alicia remained her selfless, funny, loving self, comforting other children and keeping her bright spirit alive. She was brave beyond measure,” said Amanda.<\/p>\n At school, Amanda says her kindness stood out just as strongly. She would seek out children who were alone and make them feel included, and she was also the first to volunteer to help. Her compassion and enthusiasm earned her a Headteacher\u2019s Award in her very first term at St Cenydd Community School.<\/p>\n Headteacher Rebecca Collins said: “Alicia always had the biggest smile and was full of energy and enthusiasm. She was determined to achieve her best in each lesson and she was a pleasure to teach. A very popular pupil, Alicia was kind and caring, and a much-loved and missed friend to many across our school.”<\/p>\n “Alicia always had the biggest smile”(Image: Amanda Axiak)<\/p>\n Amanda said: “Even at the end, she was thinking of other people. That\u2019s who Alicia was \u2013 a beacon of light who touched everyone she met.” Now, after marking the first anniversary of Alicia\u2019s passing, Amanda is determined to honour her daughter\u2019s legacy and is launching Alicia-Adele\u2019s Angels<\/a>, a Fundraising Group supporting Brain Tumour Research<\/a>.<\/p>\n “I will carry Alicia forever, tell her story always. I want everyone to know her and her never to be forgotten,” said Amanda. “I want to turn heartbreak into hope.” Sharing her plea, she added: “If we can help fund research and stop another family going through this terrible pain, then Alicia\u2019s legacy will live on.”<\/p>\n In response, Alicia\u2019s community has rallied together. A total of 74 runners took part in the Bryn Meadows Caerphilly 10K (and 2K) on Sunday May, 10, in her memory. Participants included staff from Alicia\u2019s primary school, Cwm Ifor, nurses from the Grange University Hospital who cared for Alicia in her final days, as well as friends and family, including Amanda and her brothers. Amanda said: “When we run, we\u2019re not just taking part in a race \u2013 we\u2019re carrying Alicia\u2019s love through the streets of her community and fighting for a future where no family has to endure this.”<\/p>\n Dr Karen Noble, director of research, policy and innovation at Brain Tumour Research, said: “Alicia\u2019s story is a powerful and heartbreaking reminder of the devastating toll brain tumours take on entire families. We are deeply grateful to Amanda for sharing her daughter\u2019s story so courageously.<\/p>\n “Establishing Alicia-Adele\u2019s Angels in Alicia\u2019s memory is a remarkable tribute, creating a lasting legacy, while helping to fund the vital research needed to improve outcomes for brain tumour patients. Brain tumours continue to devastate families across the UK.<\/p>\n “One in three people knows someone affected, and nearly 13,000 people are diagnosed with a primary brain tumour each year. Despite this, research into brain tumours remains critically underfunded, highlighting the urgent need for greater investment and prioritisation.”<\/p>\n![\"Amanda](\"https:\/\/www.newsbeep.com\/uk\/wp-content\/uploads\/2026\/05\/0_Alicia-with-her-mum-Amandajpeg.jpg\")
<\/p>\n![\"Alicia](\"https:\/\/www.newsbeep.com\/uk\/wp-content\/uploads\/2026\/05\/0_Alicia-Adele-primary-image-to-use_with-blur-effect.jpg\")
<\/p>\n![\""Alicia](\"https:\/\/www.newsbeep.com\/uk\/wp-content\/uploads\/2026\/05\/0_Amanda-Alicia2.jpg\")
<\/p>\n