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Last April, 11-year-old Alicia‑Adele passed away with a brain tumour, just 15 days after she woke up one morning with a numb arm.

Her mother, Amanda Axiak, is now sharing her story – and calling for action on the low survival rates of brain tumour patients in Wales.

The five‑year survival rate for brain tumour patients in Wales stands at just 17.2%, and brain tumours remain the biggest cancer killer of children and adults under 40.

Alicia‑Adele died from an inoperable and incurable diffuse midline glioma (DIPG), and her mother is now campaigning alongside Brain Tumour Research, urging the Welsh Government to invest in better diagnostic pathways and improved access to clinical trials.

The charity is calling for a national annual spend of £35 million to bring survival rates in line with other cancers, such as breast cancer and leukaemia.

‘She had a heart of pure gold’

Alicia‑Adele, a trophy‑winning dancer and gymnast, and a keen netball player and swimmer, woke on April 10, 2025 with a numb arm.

Within hours, the numbness had spread to her face and leg. After speaking to a GP, who suspected a stroke, Amanda rushed her to A&E.

Two days later, an MRI scan revealed the devastating diagnosis of an inoperable DIPG, which typically carries a prognosis of eight to 12 months and is the leading cause of brain tumour deaths in children.

Alicia‑Adele passed away on 25 April 2025, just 13 days after diagnosis and only 15 days after her first symptoms.

Amanda described her daughter as the “perfect child,” recalling how happy, loving, and selfless she was.

“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.”

Amanda said her life was turned upside down in just two weeks, admitting that before her daughter’s diagnosis she had no idea how little was being done to tackle brain tumours in the UK.

“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 must change. Children are losing their lives.”

Alicia was a much‑loved daughter and sister to her three older 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.

At school, her kindness stood out just as strongly. She sought out children who were alone, made them feel included, and was always the first to volunteer to help.

Her compassion and enthusiasm earned her a Headteacher’s Award in her first term at St Cenydd Comprehensive School in Caerphilly.

Headteacher Rebecca Collins said: “Alicia-Adele 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.

She was a very popular pupil, so kind, caring, and a much‑loved and missed friend to many across our school.”

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.

The community has rallied behind her. A total of 74 runners took part in the Caerphilly 10K and 2K on Sunday May 10 in Alicia’s memory. Participants included staff from her primary school, Cwm Ifor; nurses from the Grange University Hospital who cared for her; and friends and family, including Amanda and Alicia’s brothers.

The Alicia‑Adele’s Angels runners stood out in their distinctive pink‑and‑white fundraising t‑shirts, with pink bows tied along the route in her honour.

Before 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.”

Visit GoFundMe to donate to the cause, with all money raised going directly to Brain Tumour Research.