One morning, 11-year-old Alicia-Adele Axiak woke up with a numb arm. Initially, it seemed unusual—perhaps she had slept awkwardly or sustained a minor injury during play. No one suspected anything alarming, as children often experience temporary tingling. However, the numbness quickly spread to her face and leg, prompting her family to seek urgent medical help. Within two days of the first symptom, doctors delivered devastating news: Alicia had an aggressive, untreatable brain tumor. Just 15 days after she first mentioned her arm, she passed away.
More than a year later, her mother, Amanda Axiak, is sharing her story to raise awareness about one of the deadliest childhood cancers, emphasize the urgent need for brain tumor research, and generate funds for better treatments. Her hope is that Alicia's short, bright life can make a difference.
What Happened to Alicia-Adele Axiak?
Alicia's story seems almost unbelievable. According to People magazine, she was a "perfect" daughter, cherished by family and friends in Caerphilly, Wales. On April 25, 2025, she succumbed to a brain tumor known as diffuse midline glioma, or DIPG. Her first symptom was a numb arm, followed by numbness in her face and leg. Her mother immediately contacted a doctor, who suspected a stroke, and they rushed to the emergency room. Two days later, an MRI confirmed the worst: an inoperable, incurable tumor. After just 13 days, Alicia died.
"It was the worst day of my life. Everything ended," Amanda recalls. "I know every mum says this, but Alicia really was the perfect child. She had a heart of pure gold and loved other children, always wanting to 'mummy' them." Alicia had three older brothers—Lloyd, Llewellyn, and Llewys—and a close, loving family. She was selfless, funny, and incredibly brave.
Brain Tumour Research explains that DIPG (now often called diffuse midline glioma or DMG) is the leading cause of childhood brain tumor deaths. While children typically survive eight to twelve months, Alicia's illness progressed much faster. According to the Mayo Clinic, symptoms usually appear suddenly and worsen quickly. There is no cure, though treatments like chemotherapy and radiotherapy can help ease discomfort and prolong life in some cases.
Alicia's principal at St. Cenydd Community School, Rebecca Collins, described her as a "very popular" student and a "much-loved and missed friend." Her energy and smile stood out, and she always gave her best effort. In her honor, Amanda launched "Alicia-Adele's Angels" to raise money for research. "I will carry Alicia forever. I want everyone to know her and never forget her," Amanda says. "If we can help other families, if Alicia's story can give others hope, then her legacy lives on."
Dr. Karen Noble from Brain Tumour Research believes Alicia's story is a stark reminder of the devastating impact brain tumors have on families and the need for systemic change. Amanda's campaign, she says, will fund desperately needed research.
Diffuse Midline Glioma: What Is It and Why Is It So Hard to Treat?
Diffuse midline glioma (previously DIPG) is one of the most aggressive and deadly brain cancers in children. It originates in the brainstem's pons, which controls essential functions like breathing and balance. The tumor blends into normal brain tissue, making it impossible for surgeons to distinguish where it ends and healthy tissue begins, so surgery is not an option. While most common in the brainstem, these tumors can also affect the thalamus or spine. A genetic mutation (H3K27M) drives the tumor, causing cells to multiply uncontrollably. Symptoms appear suddenly and worsen quickly: double vision, trouble controlling eye movements, facial weakness, difficulty swallowing, slurred speech, lack of balance, and limb weakness. Diagnosis typically involves a neurological exam and MRI; biopsies are rare due to high risks. Treatments like chemotherapy and radiotherapy may ease symptoms or slow progression, but there is no cure. The average life expectancy is just months. For Alicia, it was even shorter—she died 13 days after diagnosis.
Turning Loss into Action
Alicia's death left a deep scar on her family, school, friends, and community. Teachers remember her smile, drive, and positive spirit. Her brothers, mother, and everyone close to her still feel the void. Amanda chose not to let grief consume her. She launched a fundraising initiative called "Alicia-Adele's Angels" to support brain tumor research and raise awareness about childhood brain cancers. The campaign aims to fund scientific research while highlighting the urgent need for better treatments and improved outcomes for children diagnosed with aggressive brain tumors. Brain Tumour Research, the charity backing her efforts, says stories like Alicia's are why more progress cannot wait.
