My daughter woke up with a numb arm and died two weeks later
My daughter woke up with a numb arm and died two weeks later3 hours ago Share Save Add as preferred on GoogleCatriona AitkenBBC WalesAmanda AxiakAmanda Axiak says Alicia-Adele was the "perfect" daughter who "had so much...
A significant story is unfolding on the international scene. My daughter woke up with a numb arm and died two weeks later3 hours ago Share Save Add as preferred on GoogleCatriona AitkenBBC WalesAmanda AxiakAmanda Axiak says Alicia-Adele was the "perfect" daughter who "had so much empathy and love"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 AxiakAlicia was a "fit and healthy" 11-year-old who loved gymnastics, netball and danceAmanda 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.
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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 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 AxiakAlicia was the youngest sibling with three older brothers - Lloyd, Llewelyn and LlewysAmanda 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.
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"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. "We thought our baby had Covid - it turned out to be holes in her heartPupils with same cancer become best friendsAlicia 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.
The development has drawn wide international attention, with diplomatic circles watching closely.
