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Amanda Axiak’s life was shattered when her daughter, Alicia-Adele, was diagnosed with an aggressive brain tumour and passed away just 13 days later. Alicia, an 11-year-old from Caerphilly, had been active and healthy, enjoying netball, gymnastics, and preparing for a dance competition in early April 2025. However, she woke up one morning with a numb arm that gradually spread to her face and leg. Concerned, Amanda sought medical advice, which quickly led to an MRI scan and a devastating diagnosis of diffuse midline glioma (DIPG), a rare and incurable cancerous brain tumour.
Despite Alicia’s previously perfect health and recent check-ups showing no warning signs, the symptoms developed swiftly and provided little time for the family to come to terms with the news. Amanda described the moment she received the diagnosis as a complete upheaval of their world: “It ripped our world apart entirely.” The doctors informed them the tumour was inoperable, and Alicia faced a very limited prognosis. She died peacefully at home with her family around her on 25 April 2025, less than two weeks after showing symptoms.
Following her daughter’s death, Amanda delved deeply into understanding brain tumours and their treatment landscape. She found that research funding for brain tumours in the UK is severely lacking, with only 1% of the cancer research budget allocated to this area since 2002. Brain tumours are the leading cause of cancer deaths among children and adults under 40 in Wales, yet survival rates remain alarmingly low—just 17.2% of patients in Wales survive beyond five years after diagnosis, sharply contrasted with a 61.5% five-year survival rate across all cancers. Amanda expressed her shock at this reality, calling the funding situation “appalling.”
In response, Amanda launched Alicia-Adele’s Angels, a campaign group aimed at raising awareness and funds for brain tumour research. Since its creation in December, the group has raised approximately £7,500 through various events, including participation in the Caerphilly 10K race. Amanda wants the legacy of her daughter’s life to inspire change: “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 hopes that through this campaign, brain tumour patients will no longer be overlooked, and research efforts will increase to improve future outcomes.
The Welsh government has acknowledged these issues and promised that its new cancer plan will prioritize research, innovation, and better access to clinical trials, with a focus on brain cancer treatments. They are also working on strengthening legal measures related to tissue preservation to support cutting-edge care options. Amanda remains determined that Alicia’s death will drive progress: “Even if we can make a small change, it’s a small change all the same.” Her daughter’s caring nature and dream of becoming a paediatrician continue to inspire her mission to make a difference
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