Caerphilly Mother Campaigns for Brain Tumour Research Funding After Daughter Alicia-Adele Axiak Dies
A mother from Caerphilly is campaigning for increased research funding into aggressive brain tumours following her daughter's death just under two weeks after diagnosis. Amanda Axiak’s 11-year-old daughter, Alicia-Adele, died on 25 April 2025, a mere 13 days after being diagnosed with diffuse midline glioma (DIPG), an inoperable and incurable cancerous brain tumour.
Alicia-Adele, a fit and active child, woke on 10 April 2025 with a numb arm. Within hours, the numbness spread to her face and leg, prompting an urgent GP referral. An MRI scan at The Grange Hospital in Cwmbran confirmed the devastating diagnosis on 12 April.
Amanda Axiak stated, "It ripped our world apart entirely." Alicia-Adele had shown no prior symptoms, with a recent optician visit confirming no issues. "There was no fevers, no headaches, absolutely nothing. It came from nowhere."
Brain tumours are the primary cause of cancer death among children and adults under the age of 40 in Wales. Despite this grim statistic, Brain Tumour Research, a charity, reports that the disease has attracted only 1% of the UK’s total cancer research expenditure since 2002. Survival rates in Wales for brain tumour patients stand at a mere 17.2% beyond five years post-diagnosis, starkly contrasting with 61.5% across all cancers.
In response to what she describes as "appalling" funding levels, Amanda Axiak established 'Alicia-Adele's Angels' in December. The group has since raised approximately £7,500 for Brain Tumour Research through events, including the Caerphilly 10K. Her aim is to raise awareness and ensure that "brain tumour patients don't get left behind."
The Welsh government has indicated that its new cancer plan will place "strong emphasis on research, innovation and improving access to clinical trials," along with a commitment to strengthening legal safeguards for tissue preservation. Amanda Axiak remains resolute, stating her daughter's death "will not be in vain," driven by Alicia-Adele's aspirations to become a paediatrician.
