Welsh mum demands action on brain tumours
Amanda Axiak from Caerphilly lost her youngest child, Alicia-Adele, to an inoperable and incurable diffuse midline glioma
A heartbroken mum is sharing the story of how she lost her 11-year-old daughter to an aggressive brain tumour just 15 days after the first symptoms – as she calls on the newly elected Welsh Government to take 'urgent, transformative action to change outcomes for brain tumour patients in Wales'.
Amanda Axiak from Caerphilly lost her youngest child, Alicia-Adele, to an inoperable and incurable diffuse midline glioma (commonly known as a DIPG).
One in three children who die of cancer is killed by a brain tumour
Amanda is backing calls by the charity Brain Tumour Research, urging the Welsh Government to commit to investment in research, better diagnostic pathways and crucial access to clinical trials.
Brain tumours are the leading cause of cancer death in children and adults under the age of 40 in Wales.
The disease received just 1% of UK cancer research spending since 2002.
Survival rates remain low, with only 17.2% of patients in Wales surviving five years or more after diagnosis, compared to 61.5% across all cancers.
The charity has set out three urgent priorities:
- Increasing access to clinical trials in Wales
- Ending inequalities in access to innovative genomic testing technology
- Increasing investment in research into brain tumours
Between 2019 and 2024, Wales hosted 120 industry-sponsored cancer clinical trials, but none were for brain cancer, meaning no Welsh brain tumour patients were recruited to trials in their own country.
Amanda hopes that sharing her daughter’s story will help to highlight the desperate situation that Welsh brain tumour patients face.
Alicia, a trophy-winning dancer and gymnast, and keen netball player and swimmer, woke on 10 April 2025 with a numb arm. Within hours, the numbness had spread to her face and leg. After speaking to the GP who suspected a stroke, her mum, Amanda, rushed her to A&E.
Just two days later, an MRI scan revealed the 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 25 April 2025 – just 13 days after diagnosis
Amanda, 46, said: “It was such a shock – the worst experience 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. Government funding for research is practically nothing. This has to change. Children are losing their lives.
“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 ‘mummy’ them.”
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.
Amanda said: “Even at the end, she was thinking of other people. That’s who Alicia was – a beacon of light who touched everyone she met.”
Now, after marking the first anniversary of Alicia’s passing, Amanda says she's determined to honour her daughter’s legacy and is 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 her never to be forgotten,” said Amanda.
“I want to turn heartbreak into hope. If we can help fund research and stop another family going through this terrible pain, then Alicia’s legacy will live on."
In response to Amanda's story, the Welsh Government says: “This new government’s Cancer Plan for Wales will place a strong emphasis on research, innovation and improving access to clinical trials so more patients can benefit from new treatments, including for brain cancer.
"We are committed to strengthening legal safeguards so that high-quality methods of tissue preservation become standard, giving patients and families greater confidence and improving access to cutting-edge care.”