Buckley mum calls on Senedd to act on brain tumours three years after losing son Aaron
Nicola Wharton from Buckley is calling on the Senedd to expand brain tumour clinical trials in Wales, on the third anniversary today of losing her son Aaron.
Aaron was seven when he died on Easter Sunday, 9 April 2023, after a three-year battle with a grade 3 anaplastic ependymoma, a type of brain tumour.
He was four years old when he first showed symptoms.
Doctors initially thought the droop on the left side of his face was Bell’s Palsy.
Random vomiting and frequent falls followed, and tests confirmed he had a brain tumour.
Aaron spent 10 weeks at Alder Hey Children’s Hospital in Liverpool, undergoing two surgeries and developing meningitis twice.
He also received proton beam therapy and chemotherapy.
“The days afterwards were a blur of complete grief, numbness and unbearable silence,” said Nicola.
“Our house felt hollow without Aaron.”
“His toys were still in the conservatory.”
“His school uniform still hung in his wardrobe.”
Nicola had already lost a baby before Aaron died.
After losing Aaron, she miscarried twice more.
[Nicola’s second son, Lucas]
In April 2025, aged 41, she fell pregnant again and later welcomed her second son, Lucas Aaron.
“I wanted a baby more than anything I had ever wanted in my life,” she said.
“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.”
Nicola set up Aaron’s Army, a fundraising group for Brain Tumour Research, and has raised more than £59,000.
She is now backing the charity’s manifesto, Time to Do Things Differently: A Plan for Change in Wales, which calls for greater access to clinical trials in Wales, an end to inequalities in access to genomic testing, and increased investment in brain tumour research.
Her MP, Sir Mark Tami, has also been enlisted to support the campaign.
The manifesto draws on figures that Brain Tumour Research says demonstrate the scale of the problem in Wales.
Brain tumours are the leading cause of cancer mortality in people under 40 in Wales, yet the charity says the disease has received just 1% of UK national research funding since 2002.
Only 17.2% of Welsh brain tumour patients survive five years after diagnosis, compared with 61.5% across all cancers, according to Brain Tumour Research.
Between 2019 and 2024, Wales hosted 120 industry-sponsored clinical trials but none was for brain cancer.
No Welsh patient with a brain tumour could enter a trial in their own country during that period.
Health and Care Research Wales has funded one brain tumour research project since 2015 and none since 2022, Brain Tumour Research says.
The manifesto calls on the Welsh Government to launch a dedicated funding programme for brain tumour research by the end of 2026 and for Welsh recruitment to clinical trials to rise from 0% to at least 10% over the next Senedd term.
Dr Karen Noble, director of Research Policy and Innovation at Brain Tumour Research, said: “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.”
“The time to do things differently is now.”
Brain Tumour Research has also partnered with the Medical Research Council to invest £500,000 in glioblastoma research at Cardiff University, the charity’s first investment in Wales.
The project, led by Dr Ben Newland, is developing a surgically implanted device designed to deliver cancer treatment directly into the brain after a tumour is removed, bypassing the blood-brain barrier and reducing the risk of recurrence.
The manifesto, Time to Do Things Differently: A Plan for Change in Wales, is available at braintumourresearch.org/pages/manifesto-for-wales.
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