A Mother's Heartbreaking Journey and Urgent Call for Change
A North Wales mother who tragically lost her seven-year-old son to a brain tumour is sharing her devastating story on the anniversary of his passing, while calling for urgent, transformative action from the Welsh Government to give hope to families affected by this cruel disease.
The Devastating Diagnosis and Three-Year Battle
Nicola Wharton from Buckley lost her beloved son Aaron to a grade 3 anaplastic ependymoma in 2023, following a three-year battle that began when he was just four years old. Initially, doctors believed Aaron's symptoms indicated Bell's Palsy, but a droop on the left side of his face quickly escalated to random vomiting and frequent falls. The subsequent diagnosis shattered the family's world completely.
Aaron spent ten grueling weeks at Alder Hey Children's Hospital in Liverpool, undergoing two major surgeries and developing meningitis twice during his treatment. He also received proton beam therapy and chemotherapy in his fight against the aggressive tumour. Despite moments of hope that his treatment was working, Nicola and her partner Lee lost their adored son on Easter Sunday, April 9, 2023.
Unbearable Grief and New Life
"The days afterwards were a blur of complete grief, numbness and unbearable silence," Nicola recalled. "Our house felt hollow without Aaron. His toys were still in the conservatory. His school uniform still hung in his wardrobe."
Having lost a baby before Aaron passed away, Nicola experienced two more miscarriages before falling pregnant again in April 2025 at age 41. She later welcomed her second son, Lucas Aaron, bringing both joy and profound sorrow to the family.
"I wanted a baby more than anything I had ever wanted in my life," said Nicola. "Not to replace Aaron – never that – but because being a mum was my identity, and without a child I didn't know who I was anymore."
"When Lucas was born, it was a joy I hadn't felt in years, but also a stabbing pain in my chest because Aaron wasn't there with us. There was no big brother to bring Lucas a present in hospital, no excited questions about holding him. Instead, it was just me, Lee and a tiny baby who would never meet his big brother."
"There will always be grief in our house because Aaron will never stop being our son and Lucas will never stop being his brother. But, of course, we're not the only family who have endured losing a child."
Aaron's Army and the Fight for Change
Determined that no other family should endure what hers has suffered, Nicola established Aaron's Army, a fundraising group for Brain Tumour Research that has raised more than £59,000 to date to support desperately needed scientific investigation. Now, during Brain Tumour Awareness Month, Nicola is calling on the Welsh Government to take immediate action and has enlisted the support of her MP, Sir Mark Tami.
The statistics paint a stark picture of the challenges facing brain tumour patients in Wales. Only 17.2 percent of Welsh patients survive five years after diagnosis – compared to 61.5 percent across all cancers. Shockingly, between 2019 and 2024, Wales hosted 120 industry-sponsored clinical trials, but none for brain cancer, meaning no Welsh brain tumour patients could join trials in their own country.
The Manifesto for Change
Nicola is backing Brain Tumour Research and its bold new manifesto for Wales titled "Time to Do Things Differently: A Plan for Change in Wales," which sets out three urgent priorities:
- Increase access to clinical trials in Wales
- End inequalities in access to innovative genomic testing technology
- Boost investment in research into brain tumours
Currently, research activity into brain tumours is overwhelmingly concentrated in Cardiff, creating geographic and practical barriers for patients across West and North Wales. Brain Tumour Research is calling for Welsh recruitment to clinical trials to rise from zero percent to at least ten percent over the next Senedd term.
Since 2015, Health and Care Research Wales has funded only one research project into brain tumours, with none funded since 2022. The manifesto calls on the Welsh Government to launch a dedicated funding call for research into brain tumours by the end of 2026 and to be held accountable for progress.
Expert Analysis and Research Investment
Dr Karen Noble, director of Research Policy and Innovation at Brain Tumour Research, stated: "It is unacceptable that there have been no brain tumour clinical trials in Wales in five years. Brain tumours are the leading cause of cancer death in children and young people, yet patients here are being locked out of innovation."
"Our manifesto for Wales is a clear, evidence-based roadmap for change. By expanding access to clinical trials, embedding whole genome sequencing into standard care, and committing to targeted research funding, the Senedd – regardless of who is in power come May – has the power to transform survival and give patients real hope. The time to do things differently is now."
In a significant development, Brain Tumour Research has partnered with the Medical Research Council to invest £500,000 in pioneering glioblastoma research at Cardiff University, marking the charity's first major investment in Wales. Led by Dr Ben Newland, the project is developing a surgically implanted, sponge-like drug delivery system designed to bypass the blood-brain barrier and deliver cancer treatments directly into the brain after tumour removal, reducing side effects and helping prevent recurrence.
Nicola Wharton's heartbreaking story serves as a powerful reminder of the urgent need for action, research funding, and improved access to clinical trials for brain tumour patients across Wales, offering hope that other families might be spared the devastating loss she has endured.
