My daughter woke up with a numb arm and died two weeks later

A woman whose daughter died less than two weeks after being diagnosed with an aggressive brain tumour is campaigning to change "appalling" research funding so her death "isn't in vain".

In April 2025, Alicia-Adele Axiak, 11, from Caerphilly woke up with a slightly numb arm amid a week spent playing netball, doing gymnastics and preparing for an upcoming dance competition.

But her mum Amanda said their lives were "ripped apart entirely" when an MRI found diffuse midline glioma (known as DIPG) - a cancerous brain tumour - and she died just 13 days later.

The Welsh government said its new cancer plan would place "strong emphasis on research, innovation and improving access to clinical trials".

Amanda said Alicia, the youngest of the family with three older brothers, was "a perfectly healthy girl, very fit, so full of life".

"The week it started, she went to her dance class on the Tuesday to get ready for her competition on the weekend. Wednesday she stayed on at school to do netball. Thursday morning, we were all getting ready for work, school and college and she had a bit of a numb arm," Amanda, 46, told BBC Radio Wales Breakfast.

"She said 'mam, my arm doesn't feel right' and I said 'it's maybe from netball or you slept on it awkward' and she carried on getting ready absolutely fine.

"Throughout the day we were messaging back and forward and the numbness went to the side of her face and her leg.

"I phoned the GP and they got back in seconds. They said it's very unusual, but it sounds like the symptoms of a stroke."

Amanda was told to take Alicia straight to the Grange Hospital in Cwmbran, Torfaen, where she was kept in overnight. An MRI scan led to them receiving her "devastating diagnosis" on 12 April 2025.

"It ripped our world apart entirely."

Alicia had been seen by an optician just one month prior and had not shown any other signs of being unwell.

"There was no fevers, no headaches, absolutely nothing. It came from nowhere."

Amanda continued: "They said it was inoperable and incurable. Alicia didn't know the full extent... we just wanted her to hold onto hope.

"There was just no time. But she went peacefully with all her family around her and she went as Alicia."

Alicia died on 25 April, and Amanda said she had since done a lot of research about her condition and discovered "the funding is absolutely appalling" for brain tumour research.

Brain tumours are the leading cause of cancer death in children and adults under the age of 40 in Wales, but the disease has received just 1% of UK cancer research spending since 2002, according to the charity Brain Tumour Research.

The organisation said only 17.2% of patients in Wales survived five years or more after diagnosis, compared to 61.5% across all cancers.

"That's just a shocking statistic really," said Amanda.

In December, she set up Alicia-Adele's Angels, a campaigning group which has raised about £7,500 so far for Brain Tumour Research, from events including the Caerphilly 10K race.

She wants to spread awareness "far and wide" as well as "carry the love and legacy of my little girl [and] raise much-needed funds... so brain tumour patients don't get left behind".

"We talk about Alicia all the time, we cry about her, we laugh about her. It's my point for her to never be forgotten," she said.

Amanda said it was Alicia's dream to be a paediatrician.

"I've always said, for as long as my heart beats, so will Alicia's.

"I thought she would have helped all these little angels, hence why I came up with the name Alicia-Adele's Angels.

"Every parent thinks their child is perfect, of course they do, but she was. She was an absolute angel, always cared for everyone.

"She'd walk home from school carrying bees that needed some sugar water.

"If there were any children sat alone, they wouldn't be on their own for long, Alicia would come and take them under her wing."

The Welsh government said its cancer plan for Wales would ensure "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," it said.

Amanda said she was determined her daughter's death would not be in vain, adding: "She just had so much empathy and love. She is my inspiration and I think she's been an inspiration for a lot of people.

"Even if we can make a small change, it's a small change all the same."