Mum Fights for Research After Daughter's 13-Day Battle

An 11-year-old girl's rapid death from an aggressive brain tumour has sparked a campaign for increased research funding. Alicia-Adele Axiak, from Caerphilly, was diagnosed with diffuse midline glioma (DIPG) in April 2025 and passed away just 13 days later, devastating her family. Her mother, Amanda, described Alicia as a healthy and vibrant child, making the sudden diagnosis and rapid decline all the more shocking.

Amanda has since discovered that research into brain tumours, which are the leading cause of cancer death in children and those under 40 in Wales, receives a disproportionately small amount of funding. Statistics indicate that brain tumours have received only 1% of UK cancer research spending since 2002. The survival rate for patients in Wales after five years is significantly lower for brain tumours compared to other cancers.

Motivated by her daughter's memory, Amanda established a campaigning group to raise awareness and funds for vital research. She aims to ensure that no other family experiences such a devastating loss due to inadequate research. The Welsh government has acknowledged the need for improved cancer research and innovation, committing to strengthening safeguards for tissue preservation and enhancing patient access to new treatments.