Parents concern over son's brain cancer treatment

The family of an eight-year-old boy with a rare brain tumour have said they are concerned the drug scheme he is participating in could end at any time.

Jack Craven, from Sherburn in Elmet in North Yorkshire, has diffuse intrinsic pontine glioma (DIPG).

He became the first child with DIPG to be given a new medicine at Leeds Children's Hospital in February.

His family have since raised more than £22,000 in case the scheme ends and they need to find treatment elsewhere.

Jack is being treated through a compassionate access scheme, which is a treatment option only given in extreme circumstances.

It allows the use of an unauthorised medicine, under strict conditions, of products which are still in development.

Due to the experimental nature of the drugs the company providing free early access to the treatment asks for a consent form to be signed, in case the drug cannot be supplied indefinitely.

Explaining what happened to Jack his father, Adam Craven, said during last year's summer holidays Jack had begun to experience difficulty walking in straight lines and his handwriting had suddenly deteriorated.

Mr Craven said soon afterwards Jack could not work out how to peddle his bicycle, which he had previously ridden without problems.

"He went from running round the football pitch to being unable to walk unaided within a matter of weeks," he said.

Following a GP appointment and a brain scan at York Hospital, Jack was taken to St James's Hospital in Leeds.

He was then diagnosed with DIPG and offered a palliative course of radiotherapy.

He has since lost the ability to walk independently and struggles to swallow.

Jack's new drugs treatment began at the children's hospital eight weeks ago, which Mr Craven told BBC Radio York was "going well in regards of not seeing any new symptoms".

However, Mr Craven said the family had to sign a consent form when they were given the medicine "to say we've got to be aware this can be pulled at any minute, as it's not directly through the NHS".

He said they had since been crowdfunding in case they were faced with "no other option but to resource the drug by making a 40-hour round trip to Zurich every three months to prolong Jack's life".

Jack cannot fly because of his condition, so the family have used funds raised so far to buy a camper van, which they said will be used for the Zurich trips if needed.

Colin Holton, clinical director at Leeds Children's Hospital said staff were "working hard to provide the best possible care for Jack".

He said Jack was one of the first paediatric patients in the UK to access the new drug, which was currently only available through clinical trials or compassionate access schemes.

Mr Holton said In rare cases like Jack's clinicians worked with families to secure access to "innovative treatments" where no standard treatments were available.

Mr Craven has described his son as "amazingly strong" and said he wanted to say a "massive thank you" to anyone who had offered the family support.

He said: "Although Jack can't say much right now I'm confident he feels the love around him."

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