A FLINTSHIRE woman is among more than 112,000 people affected by brain tumours who are demanding action from the Government to fund research to help find a cure.

Nicola Wharton, 37, signed a petition created by the charity Brain Tumour Research calling for increased investment in scientific research to bring parity of funding with other cancers.

Nicola’s son, Aaron, 5, was diagnosed with a brain tumour in April last year.

Nicola, who lives in Buckley with her husband, Lee, said: “The first sign that something was wrong with Aaron was when he developed a droop on the left side of his face.

"His beautiful smile looked lopsided. He was initially misdiagnosed with Bell’s Palsy but when his coordination started to deteriorate rapidly, further tests were carried out.”

It was then when a tumour was discovered on the back of his head.

Nicola added: “We were both distraught and upon hearing the words ‘brain tumour’, we automatically thought the worst. We were told that the tumour was large and was in the posterior fossa. I was in utter shock. Lee broke down. I had never seen him cry before.”

Brave little Aaron Wharton.

Brave little Aaron Wharton.

Little Aaron had surgery to remove the tumour. Following the operation, the results from the biopsy showed the tumour was grade 3 (high-grade) anaplastic ependymoma.

Ependymoma brain tumours tend to be diagnosed in children around the age of five years old. ‘Anaplastic’ means the tumour is formed of cancer cells that are dividing rapidly and have little or no resemblance to normal cells.

Nicola said: “When we found out it was aggressive and rare, we soon became very conscious of the stark prognosis. Aaron had to undergo a gruelling 6.5-week course of proton beam radiotherapy, to try to prevent the tumour from growing back.”

Aaron suffers with some long-term side effects of his treatment, including short-term memory loss, low energy levels and sensitivity to loud noise. He continues to be monitored with MRI scans every three months.

Nicola added: “It’s a year since our nightmare began and to think that someone as small as Aaron could go through what he’s endured, is inconceivable.

"I am supporting the petition as I struggle to comprehend why there isn’t more funding into brain tumour research, especially when you consider that the disease kills more children and adults under the age of 40 than any other cancer.

"I seem to be hearing of more and more cases of brain tumours, yet funding levels remain drastically low. I am committed to helping to raise awareness of the issues surrounding brain tumours, having experienced first-hand the devastation they cause.”

A report being circulated to MPs today (Thursday, April 15) highlights the fact that brain tumours kill more children and adults under the age of 40 than any other cancer. Historically, just 1 per cent of the national cancer spend has been allocated to this devastating disease.

The Brain Tumour Research charity says that since 2002, when cancer spend records began, £680 million has been invested in breast cancer while just £96 million has been spent on researching brain tumours.

In its petition report, 'Level Up and Stop the Devastation', the charity is calling on the Government to:

  • Introduce a new brain tumour research levelling up fund of £105 million
  • Increase the national investment into brain tumour research to £35 million a year
  • Demonstrate joined up thinking for investment across the brain tumour research pipeline

Speaking at Prime Minister’s Questions in March, the PM said he looked forward to meeting with Derek Thomas MP, chairman of the All Party Parliamentary Group on Brain Tumours, to discuss the matter once it was “safe to do so.”

The PM told the House of Commons that the Government had already promised an investment of £40 million but campaigners point out that, three years into the five-year period over which the funds had been promised, just £9 million has been allocated.

Sue Farrington Smith MBE, chief executive of Brain Tumour Research, said: “My sister’s little girl, Alison Phelan, was diagnosed with a brain stem glioma (DIPG) brain tumour in August 2000. Ten months later we lost her, in June 2001, three weeks before her eighth birthday.

“Twenty years on and the fate of adults and children diagnosed with these tumours has not improved - in fact the five-year survival rate has fallen to just 12 per cent. What’s more, people diagnosed with low-grade tumours that become aggressive over time live with a ticking time bomb, not knowing if or when their tumour might become a lethal grade 4.

"In the meantime, they endure sometimes multiple surgeries, chemotherapy and radiation therapy.

“These families do not have time on their hands – do we really need to continue the existing rhetoric that has failed them for a generation and wait another 20 years before a cure is found? These families need a cure now.

“Along with more than 112,000 people, I am calling on the Government to make this the time to level up and stop the devastation.”