A tragic tale unfolded in Caerphilly, Wales, as eleven-year-old Alicia-Adele Axiak succumbed to a diffuse midline glioma, a rare and aggressive type of brain tumour, just fifteen days after experiencing her first symptoms. On April 25, 2025, Alicia’s life came to an abrupt end, leaving a profound impact on her family and community.
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The ordeal began when Alicia-Adele, a vivacious and enthusiastic student known for her love of gymnastics and netball, woke one morning with a numb sensation in her arm. Within hours, this troubling symptom escalated, spreading to her face and leg. Her concerned mother, Amanda Axiak, sought immediate medical attention. Initially suspected of having suffered a stroke, Alicia underwent tests that swiftly led to a far more daunting diagnosis.
A mere two days after presenting at the emergency room, an MRI revealed that Alicia had an inoperable and incurable DIPG. This diagnosis changed the family’s life irrevocably. As Amanda reflected on the harrowing day her daughter passed away, she remarked, “It was the worst day of my life… It felt like my world had ended.” She described Alicia as a “perfect child” with an innate compassion for others.
Alicia-Adele was the only daughter in a family with three older brothers, Lloyd, Llewellyn, and Llewys. Her mother painted a vivid picture of her daughter’s selflessness and joy, recalling how Alicia would comfort her peers, even in the face of her own suffering. “She was brave beyond measure,” Amanda expressed, highlighting her daughter’s resilience in the moment of crisis.
Diffuse midline glioma is recognised as the leading cause of brain tumour deaths among children, with a grim prognosis that often only allows for eight to twelve months of survival following diagnosis. According to the Mayo Clinic, symptoms of this condition can emerge suddenly and deteriorate rapidly. While treatments such as chemotherapy and radiotherapy exist, they often only serve to alleviate discomfort rather than provide a cure.
Alicia-Adele’s life and character left a lasting impression on her teachers and classmates. St. Cenydd Community School’s principal, Rebecca Collins, remembered her as a bright spirit, full of enthusiasm and eagerness to learn. “Alicia always had the biggest smile and was determined to achieve her best in each lesson. She was a pleasure to teach,” Collins remarked, demonstrating the deep affection felt for Alicia by her school community.
In response to her daughter’s untimely death, Amanda has taken the initiative to launch a fundraising programme titled Alicia-Adele’s Angels, aimed at supporting research into brain tumours. A JustGiving page has been established, allowing people to contribute to this invaluable cause. The launch is intended not only to commemorate Alicia’s legacy but also to aid in the battle against a disease that affects countless families each year.
“I will carry Alicia forever and tell her story always. I want everyone to know her and ensure she is never forgotten,” Amanda asserted, demonstrating her commitment to turning her grief into a mission of hope. She hopes the initiative will prevent others from experiencing the pain her family has endured.
Dr. Karen Noble from Brain Tumour Research expressed gratitude towards Amanda for her brave decision to share her daughter’s story. “Alicia’s story is a powerful and heartbreaking reminder of the devastating toll brain tumours take on entire families,” said Dr. Noble. She acknowledged that initiatives like Alicia-Adele’s Angels create not just tributes, but also vital support for ongoing research efforts aimed at improving outcomes for children diagnosed with such aggressive illnesses.
As the community continues to mourn the loss of a bright young girl, Amanda’s courage and determination shine through her efforts to raise awareness and funds for a cause she now champions. Alicia-Adele Axiak’s memory will remain a powerful beacon for change in the fight against brain tumours, inspiring others to join in the quest for answers and hope.