Only 15 days separated a family from Wales from the first symptoms to the tragic death of their 11-year-old daughter. Alicia-Adele woke up in April 2025 with a numb hand, which her mother Amanda initially thought was a sign of a stroke. However, the actual diagnosis was much worse – doctors diagnosed the girl with diffuse midline glioma (DIPG), one of the most aggressive and deadly childhood brain tumors, which is surgically inoperable, writes
“I couldn’t take it in. I felt like my world had ended,” the mother described the shock of the whole family. Her school principal remembers her as a girl with never-ending energy and a huge smile who was the personification of kindness to everyone. Even in her last days, Alicia remained selfless and tried to comfort the other children in the hospital.
This specific type of tumor, known as DIPG, grows in the area between the two hemispheres of the brain and mainly affects children, although it can also occur in adults. The disease is manifested by the rapid onset of symptoms, which include loss of coordination, muscle weakness, problems with articulation, double vision or difficulty swallowing.
Surgical operation is impossible in these cases because the tumor does not have clearly defined borders, and any intervention could fatally damage the vital centers in the brain that control breathing and heart rate. Therefore, current medicine relies only on radiotherapy and steroids to relieve intracranial pressure.
The death of her daughter spurred Amanda Axiaková to activism, as the treatment for this disease has not changed for decades and state funding for research is minimal. On the occasion of the first anniversary of her daughter’s passing, she founded the charity organization “Alicia-Adele’s Angels” and, through sports events, raises funds for brain cancer research.
At the same time, he appeals to the newly elected Welsh Parliament to urgently invest in diagnostic procedures and clinical studies. “I want to turn the suffering I’ve experienced into hope. If we help fund research and save another family from this terrible pain, my daughter’s legacy will live on forever.” adds in conclusion.
