Caerphilly Girl, 11, Dies 13 Days After Brain Tumour Diagnosis as Mother Targets 1% Research Funding
Updated
Updated · BBC.com · May 28
Caerphilly Girl, 11, Dies 13 Days After Brain Tumour Diagnosis as Mother Targets 1% Research Funding
4 articles · Updated · BBC.com · May 28
Alicia-Adele Axiak, 11, died on 25 April 2025, just 13 days after an MRI diagnosed diffuse midline glioma, an aggressive brain tumour her family said appeared after a numb arm spread to her face and leg.
Amanda Axiak said Alicia had shown no warning signs beyond that sudden numbness, and doctors told the family the tumour was inoperable and incurable after she was taken to the Grange Hospital in Cwmbran.
Just 1% of UK cancer research spending has gone to brain tumours since 2002, according to Brain Tumour Research, even though they are the leading cause of cancer death in children and adults under 40 in Wales.
Only 17.2% of patients in Wales survive five years or more after a brain tumour diagnosis, versus 61.5% across all cancers, figures Amanda is using to press for more funding and awareness.
About £7,500 has been raised by Amanda's Alicia-Adele's Angels campaign since December, while the Welsh government says its new cancer plan will emphasize research, innovation and access to clinical trials.
As the top cancer killer of the young, why does the system allow brain tumour research to be so underfunded?
With new drugs and trials finally emerging, is this the turning point for incurable childhood brain tumours?
With new therapies emerging, why do children with brain tumours still face treatments that haven't changed in decades?
Brain Tumours in Wales: The Urgent Fight for Funding, Research, and Equity in the Wake of Alicia-Adele’s Legacy
Overview
The report highlights the devastating impact of brain tumours on families, illustrated by Alicia-Adele Axiak’s story, which inspired her mother to launch a campaign and fundraising group supporting vital research. Despite recent investments, brain tumour research remains underfunded compared to other cancers, leading to limited clinical trials and unequal access to advanced diagnostics like Whole Genome Sequencing, especially in Wales. Aggressive tumours such as Diffuse Midline Glioma (DIPG) have poor outcomes due to a lack of effective therapies. Ongoing advocacy and community fundraising are driving progress, but urgent government action is needed to address funding gaps and improve care for patients.