Boy, 11, is denied life-prolonging drug treatment because his rare and incurable brain tumour is a millimetre too small, his parents say

A boy has missed out on a life-prolonging drug for his rare and incurable tumour because other treatments left it 0.04 inches too small.

Ronnie Hood, 11, spent a year with neck pain and tingling in his fingers that was initially put down to spending too much time playing video games on his phone.

He was eventually diagnosed with a malignant brain tumour that had spread into his spine and underwent an operation before having chemotherapy and radiotherapy.

The gruelling treatments succeeded in fractionally reducing the growth – but excluded him from accessing trials of a revolutionary drug as a result.

ONC201, from US-based firm Chimerix, is an experimental drug used to treat brain tumours in young adults that has extended life-expectancy in patients with similar conditions.

Ronnie’s devastated mother Vicky, 50, told the Mail of the terrible ‘Catch-22’ the family find themselves in, saying: ‘The tumour only shrank by about a millimetre but they [doctors] said we’re not eligible.

‘It sounds awful but if it had got just a little less small or if it grew again he’d be getting it.’

His father, Nick, a 58-year-old businessman who owns a courier company, added: ‘The double-edged sword was that we are now not eligible for the drug.

‘If there is a change then we will be eligible. But in the meantime, we are sourcing it ourselves but it costs £700 per pill, or it would be about £4,000 a month.’

Ronnie, of Sudbury, Suffolk, is among a small number of children in the UK to develop diffuse midline glioma (DIPG) and the only one where it has moved from the brain into the spine.

Over time it is fatal as it affects the brain’s ability to control the body’s vital functions.

Ronnie spent a year in pain before he went to his GP and was referred to a physiotherapist for what was believed to be a repetitive strain injury.

But the physio exercises left him ‘crying in pain’ and his parents insisted on an MRI scan which was eventually carried out in February.

This revealed the ‘octopus-shaped’ growth that affects 20-30 children in the UK each year, usually developing between the ages of five and ten.

It grows in the midline, between the two halves of the brain, and normally kills within a year, with just two per cent alive five years after diagnosis.

Ronnie, who has two sisters and two half-sisters aged between 16 and 23, had an eight-hour operation at Addenbrooke’s Hospital in Cambridge to remove part of the growth but much of it couldn’t be touched because it was within his spine.

The chemotherapy and radiotherapy had unexpectedly positive results – but with the downside that he wasn’t allowed access to the ONC201 trials.

An NHS England spokeswoman said the drug had not been approved by the Medicines and Healthcare products Regulatory Agency or submitted to the National Institute for Health and Care Excellence.

It is available in some countries, including the UK, where requests for ‘managed access’ must be submitted by a qualified physician following strict eligibility criteria.

Describing the moment she learned her son was excluded, Mrs Hood said: ‘I’m normally quite a placid person but let’s just say I lost my temper.

‘Obviously, it’s not the hospital’s fault. It’s not really anyone’s fault. There are strict guidelines with a cut-off point.

‘I said to our oncologist considering Ronnie is the only one [with the disease in his spine] you’d have thought they’d want to use him to experiment on to see what it does. But it’s got to get bigger before they’ll consider giving it to him.’

Of the effect on her son, she added: ‘It’s just horrific. Ronnie has gone from bouncing off the walls, riding his bike, doing art and going down the park with his friends to not being able to use his hands.

‘I have to dress him, feed him and shower him. He can do hardly anything now and so it is horrific to watch him.’

The schoolboy’s extended family have set up a GoFundMe page to raise £50,000 towards the cost of purchasing ONC201 privately, raising £32,000 so far.

‘We didn’t want to go public with it but now we’re having to buy it, we literally have no choice. We can’t thank everyone enough,’ his mother added.

Chimerix were contacted for a comment.