11-YO dies 15 days after waking up with a numb arm: Mother of ‘perfect daughter’ shares devastating story of a ‘silent killer’

One morning, Alicia-Adele Axiak, age 11, woke up with a numb arm. At first, it seemed odd — maybe she had slept funny, or maybe it was a playdate mishap. Nobody imagined it to be anything terrifying — kids get pins and needles all the time.But then the numbness spread, first to her face, then her leg. Her family knew something wasn’t right and rushed her to get help. Within two days of that strange sensation, doctors gave her family the worst news imaginable: Alicia had an aggressive, untreatable brain tumor. Just 15 days after she first mentioned her arm, Alicia was gone.Now, more than a year later, her mother, Amanda Axiak, is telling her story. She wants people to understand the reality of one of the deadliest childhood cancers, highlight the urgent need for more research into brain tumors, and raise money for better research.

Her hope is that Alicia’s short, bright life makes a difference.

What happened to Alicia-Adele Axiak?

When one hears it for the first time, Alicia’s story feels impossible to believe. Per People, she was a “perfect” daughter, loved by family and friends in Caerphilly, Wales. On April 25, 2025, she died from a kind of brain tumor called diffuse midline glioma, or DIPG.Her first symptom was a numb arm. That was it. Soon, the numbness reached her face and leg, sending her mother into action.

They went from a call to the doctor, who guessed she was having a stroke, straight to the emergency room. Two days after that, an MRI showed what no parent wants to hear: an inoperable, incurable tumor.After just 13 days, Alicia died. “It was the worst day of my life. Everything ended,” Amanda remembers. "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, as her mom says, incredibly brave.Now, Brain Tumour Research explains that DIPG (now often called diffuse midline glioma or DMG) is the main cause of childhood brain tumor deaths. Kids usually get eight to twelve months, but Alicia’s illness raced much faster.Per the Mayo Clinic, symptoms usually begin suddenly and quickly get worse.

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, called her a “very popular” student and a “much-loved and missed friend.” Her energy and smile stood out, and she always tried her hardest no matter what. In her honor, Amanda started “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 tough reminder of how devastating brain tumors are for families, and why the system needs to change. Amanda’s campaign, she says, will help fund the kind of research that’s desperately needed.Read more: 16-YO dies minutes after eating ‘safe’ ice cream with friends: What happened to Adriano D'Orsi?

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, deadly brain cancers in children. It starts in the brainstem’s pons, the part that controls essential functions like breathing and balance.Here’s what makes it so cruel:

Treatments like chemotherapy and radiotherapy may ease symptoms or slow things down, but there’s no cure. The average life expectancy in this case? Just months.For Alicia, it was even shorter, as she died just 13 days after learning her diagnosis.Read more: Childhood dementia: 8-YO boy’s mother is ‘watching my child fade away every single day’ in a rare Sanfilippo syndrome

Turning loss into action

Alicia’s death left a deep scar, not just for her family but for her school, her friends, and the whole community. Teachers remember her smile, drive, and positive spirit. Her brothers, her mother, and everyone close to her still feel the void.Amanda chose not to let the grief swallow her. She has launched a fundraising initiative called "Alicia-Adele's Angels" to support brain tumour research and raise awareness about childhood brain cancers. The campaign aims to fund scientific research while drawing attention to the urgent need for better treatments and improved outcomes for children diagnosed with aggressive brain tumours.Brain Tumour Research, the charity backing her efforts, says stories like Alicia’s are why more progress simply can’t wait.