Teenager with brain tumour flies home after failed US cancer trial leaves family with £370,000 bill

• Video report by ITV News Anglia's Callum Fairhurst

A teenager with a brain tumour has returned to the UK after a failed attempt to access experimental cancer treatment in America left his family with hospital bills of almost £370,000.

George Fox, 13, from Bedfordshire, was diagnosed with glioblastoma last year and was due to take part in a pioneering clinical trial in Los Angeles.

His family had raised more than £330,000 for the trip after they were told that he was eligible for the treatment.

However, his condition deteriorated on the flight out the US and he had to be rushed into intensive care after suffering seizures on the plane.

The hospital bed alone was costing the family £15,500 ($21,000) a day. During his stay George also underwent surgery twice.

At the time George's father Matt told ITV News Anglia: "A doctor pulled us to one side and said 'if he goes into cardiac arrest, do you want us to resuscitate?'

"We'd only been in LA for two hours. They weren't sure if he'd survive the journey - it was only 20 minutes."

The family launched an appeal asking people to donate to their online fundraising page to help with the costs.

To the delight of family and friends George's condition improved and thousands of people donated enabling him to fly home. He arrived back home at the weekend. 

Mr Fox said: "A neurosurgeon came in and said 'we're not sure that you're going to get home'. So from that point onwards, we were always in doubt whether we'd get home.

"That was probably the most frightening thing for us: to be stuck in America and George being really unwell and not [having] all his family around him."

Louise Fox, George's mother, said: "I think until the very last minute and almost until getting off the plane at this end, we couldn't feel relieved because we were so, so terrified.

"I still had that fear at the back of my mind that we wouldn't make it or he'd deteriorate."

For his family, it is a devastating scenario, with George having been fit and healthy up until last April when a tumour was found in his brain.

The family have now accepted that it is very unlikely George will be well enough to take part in the cancer trial and are now focusing their attention on raising awareness about brain tumour research and treatment.

They say families should not have to be forced to travel aboard and pay a fortune to try and save a loved one's life.

Mrs Fox added: "Every child or adult with a tumour deserves an equal chance. It shouldn't be dependent on where they live, and I certainly never, ever thought that living in the UK would be a disadvantage for us.

"I want there to be more funding for brain tumour research. No parent should ever be told, in this day and age, that there is a 0% chance.

"It's not good enough. Many parents will be hearing that news today. It's not that rare."

Mr Fox added: "We're not prepared to stop looking and fighting for him. He's not prepared to stop, he wants to carry on. So we will just carry on until we know it's time to stop and we don't feel like it is at the moment."

Medical charities have long argued that families should not have to fork out thousands of pounds to send their children to other countries for treatment.

"Why aren't treatments like that or trials that available in the UK?" said Hugh Adams from Milton Keynes-based Brain Tumour Research.

"Ultimately, that will boil down to research funding. If we're going to avoid more stories like George's, and more distress and anguish for families like George's, we have to look at funding discovery science in the UK."

A spokesperson for the Department for Health and Social Care reiterated that the government was committed to supporting brain cancer research.

He said: "We have redoubled our efforts to find therapies and new treatments and in 2018 announced £40m of funding over five years which is supporting brain cancer research."

The Health Secretary has also launched a 10-Year Cancer Plan to make the country’s cancer care system the "best in Europe", the spokesman added.