Family of Dunstable teen with incurable tumour supports campaign for research into brain cancer

A Dunstable family, who raised almost £100,000 in a week after their son was diagnosed with an incurable brain tumour, is calling on more funding for research.

In June Arnold Chappin, known as Arnie, aged 13, was given the devastating news he has a brainstem glioma.

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, Greater Manchester, 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.”

The only treatment option offered to Arnie was radiotherapy, which may extend his life by a few months.

The family immediately set up a Go Fund Me page 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 for support as Arnie’s condition worsens.

See Arnie’s story here: https://www.lutontoday.co.uk/news/people/fundraiser-for-dunstable-teen-with-untreatable-brain-tumour-hits-almost-ps80k-in-two-days-4192082

Samuel 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.

Charlie Allsebrook, community development manager for the charity, 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.”

To sign and share the petition, go to www.braintumourresearch.org/petition

Brain Tumour Research funds sustainable research in the UK. It also campaigns for the Government and larger cancer charities to invest more in research into brain tumours in order to speed up new treatments for patients and, ultimately, to find a cure.