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 Senedd 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. Despite this, the disease has received just 1% of UK cancer research spending since 2002. Survival rates remain devastatingly 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 published a manifesto for Wales, titled Time to Do Things Differently: A Plan for Change in Wales, which sets 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
The manifesto highlights the stark revelation that between 2019 and 2024, Wales hosted 120 industry-sponsored cancer clinical trials, yet 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 devastating 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 and only 15 days after her first symptoms.
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.
Amanda continued: “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.”
At school, her kindness stood out just as strongly. She would seek out children who were alone and make them feel included, and she was also the first to volunteer to help. Her compassion and enthusiasm earned her a Headteacher’s Award in her very 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.
“A very popular pupil, Alicia was kind and caring, and a much-loved and missed friend to many across our school.”
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 is determined to honour her daughter’s legacy and is launching Alicia-Adele’s Angels, a Fundraising Group supporting Brain Tumour Research.
Amanda added: “I will carry Alicia forever, tell her story always. I want everyone to know her and her never to be forgotten.
“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, Alicia’s community has rallied together. A total of 74 runners took part in the Bryn Meadows Caerphilly 10K (and 2K) on Sunday, May 10 in her memory. Participants included staff from Alicia’s primary school, Cwm Ifor, nurses from the Grange University Hospital who cared for Alicia in her final days, as well as friends and family, including Amanda and her brothers.
The Alicia-Adele’s Angels runners stood out from the crowd in their distinctive pink-and-white branded Fundraising Group t-shirts, while pink bows had been tied at strategic points along the route.
Prior to the event, 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.”
Supporters can donate at the Caerphilly 10k Alicia-Adele’s angels for Brain tumour GoFundMe page.
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 and for calling on the Welsh Government to recognise brain tumours as a cancer of unmet need.
“Establishing Alicia-Adele’s Angels in Alicia’s memory is a remarkable tribute, creating a lasting legacy, while helping to fund the vital research needed to improve outcomes for brain tumour patients.
“Brain tumours continue to devastate families across the UK. One in three people knows someone affected, and nearly 13,000 people are diagnosed with a primary brain tumour each year.
“Despite this, research into brain tumours remains critically underfunded, highlighting the urgent need for greater investment and prioritisation.”
Brain Tumour Research funds sustainable research at dedicated centres in the UK, including its Centre of Excellence at the Institute of Cancer Research, London, which is working to find, test and validate new treatment options for paediatric-type diffuse high-grade gliomas. It also campaigns for the Government and larger cancer charities to invest more in research into brain tumours in order to speed up new treatments for patients and, ultimately, to find a cure.
The charity is the driving force behind the call for a national annual spend of £35 million in order to improve survival rates and patient outcomes in line with other cancers such as breast cancer and leukaemia.
To donate, visit the Alicia-Adele’s Angels JustGiving page.
