A FAMILY, who raised almost £100,000 in a week after a 13-year-old boy was diagnosed with an incurable brain tumour, is calling on more funding for research.
In June, Arnold Chappin, known as Arnie, was given the devastating news he has a brainstem glioma, after experiencing symptoms including disorientation and slurred speech.
His parents Ruth and Brett were told the mass was inoperable because of its location and were given a devastatingly short prognosis for Arnie, of just six to nine months.
His uncle Samuel Icke, from Atherton, said: “It was a complete shock, and to be honest as a family we’ve all taken it incredibly badly.
“This feels like an impossible thing to accept in somebody so young.”
The 33-year-old added: “Initially we weren’t open with Arnie, we didn’t know what to do. He had a lot of questions and he knew there was a lot we weren’t saying; so after a few days, Ruth had to sit him down and speak to him. She told him everything, including his prognosis.
“It was the worst experience of my sister’s life. They were both crying together. He was so upset and is really angry about it all, but he is incredibly brave.”
Arnie suddenly began losing his balance in June and was feeling sick and anxious. His symptoms were initially put down to a change in his ADHD medication, but then one morning he became upset and overwhelmed when he physically couldn’t put his socks and shoes on.
Following a test from his GP, which saw him struggle with basic coordination, he was referred to Luton and Dunstable University Hospital where a CT scan revealed a 4cm x 4cm mass on his brain.
The only treatment option offered to Arnie was radiotherapy, which may extend his life by a few months.
The family immediately set up a fundraising to enable his parents to take time off work and spend time making precious memories with their son.
They are also looking to rent a house in Manchester, to be nearer the wider family in Atherton for support as Arnie’s condition worsens.
Samuel, a hairdresser, is now campaigning alongside the charity Brain Tumour Research to help reach 100,000 signatures on its petition to increase research funding, in the hope of prompting a parliamentary debate.
“It's unbelievable how little money goes on brain tumour research. My dad, Arnie’s grandad, had a cancerous brain tumour when he was 18 and it left him with stroke-like symptoms and early onset dementia,” he said.
“Here we are again, decades later, and the treatment options have not changed to help Arnie. How is that acceptable?
“This disease is killing more people under 40 than any other cancer, and more children than leukaemia, yet the research is not being prioritised. It’s incredibly frustrating.”
The charity is calling on the Government to ring-fence £110 million of current and new funding to kick-start an increase in the national investment in brain tumour research to £35 million a year by 2028.
Brain Tumour Research wants the Government to recognise brain tumour research as a critical priority. It says the increase in research investment would put brain tumours in line with the spend on cancers of breast, bowel and lung, as well as leukaemia.
Charlie Allsebrook, community development manager for Brain Tumour Research, said: “Brain tumours are indiscriminate and can affect anybody, at any age. Such a stark prognosis for a child like Arnie is heartbreaking.
“We are grateful to Samuel for supporting our petition and helping to raise awareness. For too long governments have put brain tumours on the ‘too difficult to think about’ pile.
“Five years after the Government announced £40 million for brain cancer research, less than £11 million has been spent. Patients and families continue to be let down by a funding system that is built in silos and not fit for purpose.
“If everyone can spare just a few minutes to sign and share, we will soon hit the 100,000 signatures we need and help find a cure, bringing hope to families whose loved ones have been affected by brain tumours.”
To sign and share the petition before it closes at the end of October 2023, go to braintumourresearch.org/petition
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