Alicia-Adele was diagnosed with an incurable brain tumour after waking up with a numb arm
A mum said she had “no inkling” her daughter was suffering from an incurable tumour after she told her she had woken up with a numb arm.
Alicia-Adele, from Caerphilly, Wales, first complained of numbness in her arm before telling her mum, Amanda Axiak, that she was struggling to walk. The 11-year-old was later diagnosed with an aggressive and incurable brain tumour and died 13 days later – just 15 days after her first symptoms appeared.
Her mum, Amanda Axiak, described being in complete shock at the diagnosis, adding that hearing the news was an “out-of-body experience”. She said: “I almost collapsed. I felt like I had an out-of-body experience. My world had ended that day.
Click here to get the biggest stories straight to your inbox in our Daily Newsletter
“She was perfect. There was nothing wrong with her whatsoever – no headaches, nausea, fever, nothing.”
The schoolgirl first complained about her arm feeling numb to her mum, but Amanda thought nothing of it at first, thinking she may simply have slept awkwardly or over-exerted herself when playing netball. Amanda said: “We were all getting ready for work, college and school. I was doing my makeup when Alicia-Adele came in and said, ‘Mam, I’ve got a bit of a numb arm. It just doesn’t feel right’.”
However Amanda’s concerns began to grow when Alicia-Adele messaged her, whilst at school, saying her symptoms had worsened. Amanda recalls: “She told me, ‘My face feels a bit numb on one side.’ I didn’t like that.”
The mum advised Alicia-Adele to speak to her school’s first aid team. However later that afternoon Amanda received another call from her daughter. Amanda said: “That’s when she said, ‘I’m struggling to walk. “Her leg had started to go numb.”
Amanda immediately contacted her GP surgery. She said: “Within seconds, the doctor phoned me back and said, ‘You need to go straight to the Grange University Hospital because it sounds like stroke symptoms.”
Alicia-Adele’s parents took her to hospital that afternoon and doctors decided to keep her in overnight so she could undergo an MRI scan on Friday. However, on Saturday (April 12), the family were given the devastating news that she had been diagnosed with an inoperable and incurable diffuse midline glioma, commonly known as DIPG – an aggressive childhood brain tumour. The illness is the leading cause of brain tumour deaths in children, with the average prognosis being just eight to 12 months, Wales Online reports.
Amanda said: “They said to me in the hospital they would have picked this up in an eye test but I’d taken her for an eye test at an optician in Caerphilly in March, the month before, and there had been nothing. We had no inkling that this was happening.”
Fifteen days after Alicia-Adele’s first symptoms appeared, and just thirteen days after her family learned the devastating truth about her illness, she passed away. Amanda said: “It ripped us apart. It changed the way I saw the world.
“I’d be walking down the street and see children, and I’d shudder, because I’d think: that child’s world – or that family’s world – could end within days, and they’d have no idea.”
Following Alicia-Adele’s diagnosis, Amanda has now been campaigning for change and is hoping to push the newly elected Welsh Senedd to take action to improve outcomes for brain tumour patients in Wales. She said: “I’m trying to turn heartbreak into hope.
“I want to change things for other families, because if I can do something that helps even one family, then I know Alicia’s life wasn’t in vain. As long as my heart beats, so does hers.”
Dr Karen Noble, director of research and policy at Brain Tumour Research, said: “There are more than 120 different types of brain tumour, and symptoms can differ greatly depending on where the tumour is located. Common symptoms can include headaches, dizziness, coordination problems, changes in vision or hearing, nausea, or changes in the way somebody walks. But many of these symptoms are vague and can easily be attributed to other conditions.
“In Alicia-Adele’s case, there were very limited symptoms, which is why it came as such a shock to the family. We also know that many patients visit their GP several times with symptoms like headaches before a diagnosis is made. Around 40% of brain tumours are diagnosed in accident and emergency departments because they can be so difficult to detect through non-specific symptoms alone.”
She added that one of the biggest challenges for doctors was the lack of rapid diagnostic tools that could help identify when seemingly ordinary symptoms might point to something far more serious. Dr Noble also outlined the key priorities which campaigners such as Amanda are calling on the Welsh Government to act upon.
She said: “Increased investment is essential. The only way we are going to find a cure, and develop better treatments for brain tumours, is by deepening our understanding of the science, the biology and the mechanisms behind these diseases.
“We also know there is a severe lack of clinical trials in Wales. When someone is diagnosed with a brain tumour, it’s vital that we understand not only the type of tumour they have, but also its specific mutations. Even when patients are diagnosed with the same tumour type – such as the diffuse midline glioma Alicia-Adele had – every tumour can have its own unique molecular makeup.
“The more we understand about the genetics and molecular characteristics of a tumour, the more opportunities there may be to access emerging treatments, many of which are available through clinical trials.”
She adds: “That’s why we need more clinical trials in Wales, particularly for brain tumours. We also need broader access to genomic testing, so we can identify patients who may be eligible for trials that are not traditionally associated with brain cancer.
“For example, a clinical trial may be designed for lung cancer patients with a particular mutation, but if that same mutation is found in a brain tumour patient, that treatment could potentially benefit them too. We need systems in place to ensure those opportunities are accessible. So our three main asks are clear: increased investment in brain tumour research, better access to genomic testing to fully understand tumour biology, and greater access to clinical trials for patients in Wales.”
The Welsh Government has issued the following statement, on how it will proceed with research: “Research supported through Health and Care Research Wales has enabled studies across a range of conditions, including brain cancer – from improving our understanding of the disease to exploring new treatments.
“This new government’s Cancer Plan for Wales will place a strong emphasis on research, innovation and improving access to clinical trials so more patients can benefit from new treatments, including for brain cancer. We are also planning a Wales Cancer Conference next year to bring together experts and share best practice in cancer care.
“We also recognise how vital properly stored tissue is for diagnosis, research and access to new treatments. 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.”
Amanda has also been working with Brain Tumour Research to launch the Alicia-Adele’s Angel fundraising group. Amanda said: “I came up with the name ‘Alicia-Adele’s Angels’, because she herself is an angel but also because of her always wanting to be a paediatric doctor. I think ‘angels’ is what Alicia would have classed her patients. It couldn’t have been a more poignant name.”
The mum has already taken part in a number of fundraising runs for the cause and has raised over £4,000 for Brain Tumour Research. You can still donate to Alicia-Adele’s Angels here.

You must be logged in to post a comment Login