A heartbroken mother from Caerphilly, Wales, is sharing the tragic story of losing her 11-year-old daughter to an aggressive brain tumour just 15 days after the first symptoms emerged. Amanda Axiak is now calling on officials to take urgent, transformative action to improve outcomes for brain tumour patients.
Amanda lost her youngest child, Alicia-Adele, to an inoperable and incurable diffuse midline glioma, commonly known as DIPG. This type of tumour is the leading cause of brain tumour deaths in children, and one in three children who die of cancer is killed by a brain tumour.
The Devastating Diagnosis
Alicia, a trophy-winning dancer and gymnast who also enjoyed netball and swimming, woke on April 10, 2025, with a numb arm. Within hours, the numbness spread to her face and leg. After consulting a GP who suspected a stroke, Amanda rushed her to A&E. Just two days later, an MRI scan revealed the devastating diagnosis of an inoperable and incurable DIPG, which typically carries a survival prognosis of eight to 12 months. Alicia passed away on April 25, 2025, just 13 days after diagnosis and only 15 days after her first symptoms.
Amanda, 46, said: "It was the worst day of my life. I couldn’t take it in. It felt like my world had ended. Before Alicia’s diagnosis, I had never heard of a diffuse midline glioma. Shockingly, there has been no change in treatment for decades."
Alicia's Legacy of Kindness
Alicia was a much-loved daughter and sister to her three elder brothers, Lloyd, Llewellyn and Llewys. Even in hospital during her final days, her instinct to care for others never left her. "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.
At school, her kindness stood out. She would seek out children who were alone and make them feel included, and she was the first to volunteer to help. Her compassion earned her a Headteacher’s Award in her first term at St Cenydd Community School. 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."
Turning Heartbreak into Hope
Now, after marking the first anniversary of Alicia’s passing, Amanda is determined to honour her daughter’s legacy by launching Alicia-Adele’s Angels, a Fundraising Group supporting Brain Tumour Research. "I will carry Alicia forever, tell her story always. I want everyone to know her and never forget her," said Amanda. "I want to turn heartbreak into hope."
The community has rallied together. A total of 74 runners took part in the Bryn Meadows Caerphilly 10K on May 10 in her memory, including staff from her primary school, nurses from the Grange University Hospital, and family. Amanda said: "When we run, we’re not just taking part in a race – we’re carrying Alicia’s love through the streets of her community and fighting for a future where no family has to endure this."
Dr Karen Noble, director of research, policy and innovation at Brain Tumour Research, said: "Alicia’s 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’s story so courageously. Establishing Alicia-Adele’s Angels is a remarkable tribute, creating a lasting legacy while helping to fund vital research."
Brain tumours remain critically underfunded despite being the leading cause of cancer death in children and adults under 40 in the UK. One in three people knows someone affected, and nearly 13,000 people are diagnosed with a primary brain tumour each year. To donate to Alicia-Adele's Angels, visit: www.justgiving.com/campaign/aliciaadelesangels.
