Alicia-Adele was the adored little sister of three elder brothers and a loving, caring daughter.
On 10th April 2025, 11-year-old Alicia awoke with a numb arm. Later that day, she felt numbness in her face and leg. Two days later, an MRI scan revealed the unimaginable – an inoperable diffuse midline glioma. Just 15 days after the first signs appeared and 13 days after diagnosis, Alicia passed away.
Here is Alicia-Adele’s story, told by her mum, Amanda…
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.
At school, Alicia would notice if another child was sitting alone and go over to be their friend. Even while she was in hospital, she’d go round checking on the other children. Alicia was such a darling, with so much love to give.
Alicia adored her three big brothers and they, in turn, idolised her. She was a family girl through and through – happiest surrounded by those she loved.
At her secondary school, Alicia was excelling both academically and personally. She was a straight-A student and won the Headteacher’s Award, always the first to put her hand up to volunteer. Out of class, she shone in dance and gymnastics, collecting trophies along the way. Her energy extended to netball, swimming and the Girls Brigade – she really threw herself into life.
Her closest friend was Brooke, who lived just two streets away – they had an unbreakable bond. Every Friday, the girls would have sleepovers filled with laughter and imagination: putting on make-up, painting each other’s nails and playing mums and babies with their dolls. I loved their friendship and appreciated that they were still able to be children.
Then everything changed.
One Tuesday afternoon, Alicia attended her dance class ahead of a weekend competition, feeling perfectly fine. The next day, she stayed on after school for a netball match. But on the morning of Thursday, 10th April 2025, Alicia awoke complaining her left arm felt numb – we thought she’d just slept on it awkwardly.
Later that day, the numbness spread to the left side of her face and then her leg, causing her to limp. She phoned me and I called the GP, who advised going straight to A&E as it sounded like Alicia might have suffered a stroke. At the hospital, doctors told us Alicia would stay in overnight for an MRI scan in the morning. Even then, Alicia’s biggest concern was missing school and losing her 100% attendance record.
On Saturday 12th April, we were given the devastating news that Alicia had a diffuse midline glioma (commonly known as a DIPG) and that, not only was it aggressive, it was also inoperable and incurable. She was just 11 years old.
It was such a shock – the worst experience of my life. I couldn’t take it in. It felt like my world had ended.
Alicia knew she was poorly, but we kept the full extent of the diagnosis from her. We wanted her to hold onto hope. My mum has had cancer three times, and that gave Alicia faith that she could recover. Where there’s breath, there’s hope.
On 25th April 2025, only 13 days after being diagnosed with an incurable, inoperable brain tumour, Alicia grew her angel wings and became a child of God – we had lost her just 15 days after we had the very first signs that anything was wrong.
In her short final days, Alicia remained her selfless, funny, loving self, comforting other children and keeping her bright spirit alive. She was brave beyond measure.
When Alicia expressed a wish to be baptised once she recovered, I felt strongly that it needed to happen right away, so I baptised her, along with the pastor from our local church.
Brooke was heartbroken but determined to honour her best friend and began making and selling candles at school. To date, she has raised more than £300 in Alicia’s memory.
Our local church made angels to give to the children in tribute to Alicia, donating the remaining ones to us, which we sold, making £160.
Before Alicia’s diagnosis, I had never heard of a diffuse midline glioma. Shockingly, there has been no change in treatment for decades. Government funding for research is practically nothing. This has to change. Children are losing their lives.
The first Christmas without Alicia was unbearable, particularly because it was her favourite time of the year. I knew I needed to do something for Alicia – it didn’t feel right just to buy presents for the boys. I decided to hold a raffle in Alicia’s honour to raise funds for Brain Tumour Research. It went incredibly well, so I did another. The more raffles I did, the more people came and left more items to raffle in our porch. Altogether, I raised £2,407 this way.
I visit Alicia every day at her resting place. If we can save even one child in the future, we’ll know we’ve made a difference in Alicia’s name.
One in three children who die of cancer is killed by a brain tumour. Alicia’s life reminds us of the urgency to change that. She was a beacon of light, touching everyone she met.
Through her memory, I want to turn heartbreak into hope – to honour our beloved Alicia and help others in the future, while calling on the Welsh Government to take action to improve outcomes for brain tumour patients in Wales as outlined in the Charity's Manifesto. That is why we’re creating Alicia-Adele's Angels, a Fundraising Group for Brain Tumour Research.
Amanda Axiak
May 2026
One in three people in the UK knows someone affected by a brain tumour. This disease is indiscriminate; it can affect anyone at any age. What’s more, brain tumours continue to kill more children and adults under the age of 40 than any other cancer yet, to date, just 1% of the national spend on cancer research has been allocated to this devastating disease since records began in 2002.
Brain Tumour Research is determined to change this.
If you have been touched by Alicia’s story, you may like to make a donation via www.braintumourresearch.org/donate or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure.
