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

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

A mother’s grief fuels fight for better brain tumour research

My daughter woke up with a numb - In the spring of 2025, a 11-year-old girl from Caerphilly, Wales, began experiencing unusual symptoms that would soon change her family’s life forever. Alicia-Adele Axiak, known to her loved ones as Alicia, was diagnosed with a rare and aggressive brain tumour called diffuse midline glioma (DIPG) just weeks before her untimely death. Her mother, Amanda Axiak, now dedicates her time to advocating for improved research funding, aiming to ensure her daughter’s passing “isn’t in vain.”

“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.”

Amanda described how Alicia’s symptoms began seemingly out of nowhere. One week before her diagnosis, the girl was active and engaged, participating in netball, gymnastics, and preparing for a dance competition. By Thursday morning, however, she noticed a strange numbness in her arm. “She said, ‘Mam, my arm doesn’t feel right,’ and I thought it might be from netball or a sleeping position,” Amanda recalled during an interview with BBC Radio Wales Breakfast. “But she kept going, ready for the day.”

As the hours passed, the numbness spread to her face and leg, raising concerns. Amanda contacted the general practitioner, who confirmed the severity of the symptoms by comparing them to those of a stroke. “They said it’s very unusual, but it sounds like the symptoms of a stroke,” she said. That prompted an urgent trip to Grange Hospital in Cwmbran, Torfaen, where the diagnosis was confirmed just days later. “It ripped our world apart entirely,” Amanda reflected, detailing the suddenness of the illness.

Alicia had shown no signs of illness just a month prior. Her last visit to the optician was unremarkable, and there were no fevers, headaches, or other symptoms to suggest something was wrong. “There was absolutely nothing,” Amanda said. “She was perfectly healthy, very fit, so full of life.” The condition, however, struck without warning, leaving her family in shock. Doctors informed Amanda that the tumour was inoperable and incurable, but Alicia remained hopeful, determined to hold onto her dreams.

Despite the grim prognosis, Alicia’s spirit was unwavering. She had always aspired to become a paediatrician, a goal Amanda now feels is the driving force behind her campaign. “She would have helped all these little angels,” Amanda said, explaining the origin of the name for her new initiative. “I thought she would have made a difference, hence why I came up with Alicia-Adele’s Angels.”

Wales’ cancer plan faces scrutiny

The Welsh government has since announced a new cancer strategy, emphasizing the importance of research, innovation, and expanding access to clinical trials. However, Amanda believes the current funding for brain tumour research is “appalling,” arguing that the disease receives only 1% of the UK’s total cancer research spending since 2002. This underfunding has dire consequences, as brain tumours are the leading cause of cancer-related deaths in children and young adults under 40 in Wales.

“Even if we can make a small change, it’s a small change all.”

Amanda highlighted the stark survival rates associated with DIPG. According to Brain Tumour Research, only 17.2% of patients in Wales survive five years or more after diagnosis, compared to 61.5% for all cancers combined. “That’s just a shocking statistic,” she said, underscoring the urgency of the issue. Her daughter’s death has become a catalyst for raising awareness and advocating for increased support for those battling the disease.

Legacy of love and hope

In December 2025, Amanda launched Alicia-Adele’s Angels, a grassroots campaign focused on spreading knowledge about DIPG and fundraising for research. The initiative has already raised over £7,500 through events like the Caerphilly 10K race. “I want to carry the love and legacy of my little girl and raise much-needed funds,” she explained. “So brain tumour patients don’t get left behind.”

The campaign also aims to foster a deeper understanding of the disease, particularly among families who may not yet recognize its signs. “She was an absolute angel,” Amanda said, describing how Alicia used to walk home from school carrying bees that needed sugar water. “If there were any children sitting alone, they wouldn’t be on their own for long.” Her daughter’s compassion and energy left an indelible mark on those around her, a quality Amanda believes should be the focus of future efforts.

Alicia’s death on 25 April 2025 has become a symbol of the challenges faced by families dealing with brain tumours. “She just had so much empathy and love,” Amanda said, reflecting on her daughter’s impact. “She is my inspiration, and I think she’s been an inspiration for a lot of people.”

The Welsh government’s plan promises to address some of these challenges by ensuring more patients can access new treatments and by improving legal protections for tissue preservation. “We are committed to strengthening legal safeguards so that high-quality methods of tissue preservation become standard,” a spokesperson stated. “This will give patients and families greater confidence and enhance access to cutting-edge care.”

Yet, for Amanda, the fight continues. She wants to ensure that the stories of those affected by brain tumours are not overlooked. “It’s not just about Alicia,” she said. “It’s about every child who loses their battle with this disease.” Her determination to make a difference is rooted in the belief that Alicia’s life, though tragically short, can still inspire meaningful change. “For as long as my heart beats, so will Alicia’s,” she added, a testament to the enduring hope she carries for her daughter’s legacy.

Alicia’s journey from a healthy, active child to a terminal diagnosis in just 13 days serves as a poignant reminder of the need for more research and better early detection methods. As Amanda continues her advocacy, she hopes to turn her grief into a powerful movement. “I want to spread awareness far and wide,” she said. “So that no other family has to go through what we did.”