My daughter woke up with a numb arm and died two weeks later

A Heartbreaking Journey Through a Rare and Aggressive Brain Tumour

My daughter woke up with a numb – In April 2025, a young girl named Alicia-Adele Axiak, who was just 11 years old and lived in Caerphilly, began experiencing an unusual symptom: a slight numbness in her arm. At the time, she had been active in her weekly routine, playing netball and participating in gymnastics while preparing for a dance competition set for the weekend. Her mother, Amanda, described the initial signs as “something out of the ordinary,” but they quickly escalated into a tragic reality that shattered their family’s world.

“She was perfectly healthy, very fit, and full of life,” Amanda, 46, shared with BBC Radio Wales Breakfast. “It was the week it started, and she was going to her dance class on Tuesday to get ready for her competition on the weekend. Wednesday, she stayed at school for netball. On Thursday morning, we were all getting ready for work, school, and college, and she mentioned her arm wasn’t feeling right.”

Amanda noted that Alicia dismissed the numbness as a minor issue, possibly caused by her netball activities or an awkward sleep. Yet, within hours, the symptoms worsened. By the end of the day, the numbness had spread to her face and leg, prompting Amanda to contact her GP. The response was urgent, with the doctor stating that the signs were “very unusual” and “sounds like a stroke.” Despite the initial confusion, the family acted swiftly, taking Alicia to Grange Hospital in Cwmbran, Torfaen, where she was admitted overnight.

A Devastating Diagnosis and the Fight for Hope

The following day, an MRI scan confirmed the worst: Alicia had been diagnosed with diffuse midline glioma, a type of brain tumour known as DIPG. This aggressive form of cancer is often fatal, with patients typically surviving only a few months after diagnosis. The news came as a crushing blow to Amanda, who described the moment as “devastating” and “a complete loss of our world.”

“They told us it was inoperable and incurable. Alicia didn’t know the full extent, but we just wanted her to hold onto hope,” Amanda said. “There was no time. But she went peacefully, surrounded by her family, as Alicia.”

Alicia’s death on 25 April left Amanda determined to turn her daughter’s story into a rallying call for change. “She just had so much empathy and love,” Amanda reflected. “I think she’s been an inspiration for a lot of people. Even if we can make a small change, it’s a small change all.”

The Urgent Need for Better Brain Tumour Research

Amanda has since delved into the statistics surrounding brain tumours in Wales, uncovering a stark disparity in research funding. While the disease is the leading cause of cancer-related deaths among children and adults under 40, it has received a mere 1% of UK cancer research funding since 2002, according to the charity Brain Tumour Research. This figure highlights a critical gap in resources dedicated to understanding and treating such tumours.

“The funding is absolutely appalling,” Amanda said. “It’s my point for her to never be forgotten.”

The charity’s data reveals that only 17.2% of patients in Wales survive five years or more after diagnosis, compared to 61.5% of patients across all cancers. These statistics have fueled Amanda’s resolve to advocate for increased support. “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 emphasized.

A Campaign for Change and a Legacy of Love

In December 2025, Amanda launched Alicia-Adele’s Angels, a grassroots campaign aimed at raising awareness and funds for brain tumour research. So far, the initiative has garnered over £7,500 through events like the Caerphilly 10K race. The campaign’s goal is to ensure that no child suffers from this devastating condition without the chance of hope or treatment.

“I’ve always said, for as long as my heart beats, so will Alicia’s. I thought she would have helped all these little angels, hence why I came up with the name Alicia-Adele’s Angels.”

Amanda’s efforts are driven by a deep sense of purpose. She hopes to spread awareness “far and wide” and secure much-needed resources for families facing similar challenges. “She was an absolute angel, always caring for everyone,” Amanda recalled. “She’d walk home from school carrying bees that needed some sugar water. If there were any children sitting alone, they wouldn’t be on their own for long. Alicia would come and take them under her wing.”

The Welsh Government’s Commitment to Cancer Innovation

The Welsh government has pledged to address the challenges of brain tumour research through its new cancer strategy. The plan emphasizes “strong investment in research, innovation, and improved access to clinical trials,” aiming to provide more patients with opportunities to benefit from emerging treatments. Officials stated that the initiative would also strengthen legal protections for tissue preservation, ensuring higher-quality methods become standard practice.

“We are committed to strengthening legal safeguards so that high-quality methods of tissue preservation become standard, giving patients and families greater confidence and improving access to cutting-edge care,” the government said.

Amanda believes this commitment is a step in the right direction but stresses that more needs to be done. “It’s not enough to just fund research; we need to prioritize it,” she argued. “Every child deserves the chance to fight their battle with the tools we now take for granted.” Her campaign has become a symbol of resilience, blending personal grief with a broader call for systemic change.

From Personal Loss to Collective Action

Alicia’s story is now a testament to the power of advocacy. Her mother’s determination has transformed a tragic event into a platform for raising awareness about the urgency of brain tumour research. “Her dream was to become a paediatrician,” Amanda said, reflecting on her daughter’s aspirations. “Now, I carry her legacy forward, ensuring her life wasn’t in vain.”

Amanda’s journey highlights the emotional and physical toll of such diagnoses, as well as the importance of early detection and research. She hopes that by sharing Alicia’s story, more families will find solace in knowing they are not alone in their fight. “We’re not just grieving a child; we’re fighting for every child who might face the same fate,” she said.

As the campaign gains momentum, Amanda remains focused on her mission. “It’s about making sure brain tumour patients don’t get left behind,” she explained. Her voice, though heavy with sorrow, carries a message of hope—a reminder that even in the face of loss, action can be taken to improve the lives of others.

The story of Alicia-Adele Axiak is now woven into a larger narrative about the need for better resources and more attention to a disease that strikes without warning. Her family’s journey underscores the importance of vigilance, empathy, and the relentless pursuit of change. “She’s my inspiration,” Amanda said. “And I think she’s been an inspiration for a lot of people.”