Family of five-year-old boy with brain tumour speak of 'nightmare' experience

Aaron's parents said they were in "utter shock" when he was diagnosed with a brain tumour. Credit: Nicola Wharton/Brain Tumour Research

A Flintshire mum has spoken of the family's "nightmare" after her young son was diagnosed with a rare and aggressive brain tumour.

Nicola Wharton's five-year-old son Aaron was found to have the fast-growing form of cancer after investigations in April last year.

Nicola, 37, who lives in Buckley with her husband Lee, 50, said: "The first sign that something was wrong with Aaron was when he developed a droop on the left side of his face in April 2020. 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."

After a series of MRI scans, Nicola and Lee were given the devastating news that a large tumour had been found on the back of Aaron's head.

Nicola said: "We were both distraught and upon hearing the words 'brain tumour' we automatically thought the worst. I was in utter shock. Lee broke down. I had never seen him cry before."

To think that someone as small as Aaron could go through what he’s endured is inconceivable.

Nicola Wharton, Aaron's mother
Aaron continues to be monitored with MRI scans every three months. Credit: Nicola Wharton / Brain Tumour Research

On 17 April 2020, Aaron had surgery to remove the tumour - a malignant form known as high-grade anaplastic ependymoma. He then had to undergo several weeks of gruelling proton beam radiotherapy to try to prevent the tumour from growing back.

A year on, 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 committed to helping to raise awareness of the issues surrounding brain tumours, having experienced first-hand the devastation they cause."

6,000

people each year are diagnosed with a brain tumour in the UK

According to the charity Brain Tumour Research, brain tumours kill more children and adults under the age of 40 than any other cancer.

But historically, just 1% of the UK spend on cancer research has been allocated to brain tumours.

Now the charity, along with many other families, are campaigning for more funding and research into this type of cancer.

12%

of those diagnosed with a brain tumour survive beyond five years

Sue Farrington Smith MBE, chief executive of Brain Tumour Research, said: "My sister's little girl Alison Phelan was diagnosed with a 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 four.

"In the meantime, they endure sometimes multiple surgeries, chemotherapy and radiation therapy. They can suffer changes in personality and more and more disabling impacts, and their loved ones' lives and livelihoods are changed forever as they become carers."


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