A boy is unable to receive specialist drug treatment on the NHS because his rare and incurable tumour is just one millimetre small, his heartbroken parents have said.

Ronnie Hood, 11, from Sudbury, Suffolk, was diagnosed with diffuse midline glioma in March after doctors were unable to completely remove the tumour growing on his spine and brain.

Having been given only nine months to live, the young man had to undergo sessions of chemotherapy and radiotherapy, which helped shrink the tumour, but only very marginally.

However, the cut was enough to mean he would not qualify for ONC201 (an experimental drug used to treat serious brain tumours in young adults) on the NHS.

“We got the news that the drug has been shrunk, which is of course great news, but the double-edged sword was that we are no longer eligible for the drug,” his father, Nick, said.

“If that changes then we will be eligible, but in the meantime we are sourcing it ourselves, but it costs about £700 a pill, or it would be about £4,000 a month.”

Mr Hood, 58, and Ronnie’s mother Vicky, 50, took their son for a check-up in February 2023 after he said he was experiencing pain in his neck and tingling in his fingers.

Initially it was suspected that the pain might be caused by his gaming, so he was sent for physiotherapy, and about a year later he was sent for an urgent MRI.

Speaking about the moment she was told her son’s diagnosis after an eight-hour operation at Addenbrooke’s Hospital, Mrs Hood said: “I was devastated and couldn’t believe what was happening.”

“I felt guilty because it took almost a year to diagnose her, but it’s a very aggressive and extremely rare disease, so even if we’d caught it earlier it wouldn’t have mattered.

“He’s one of only a handful of people in the world who have this mutation in their spinal cord – it’s pretty frightening.

“Ronnie has gone from being able to bounce off walls, ride a bike, do art work and hang out in the park with his friends to not being able to use his hands.

“I have to dress him, feed him and bathe him. He can’t do anything anymore and so it’s horrible to watch him.”

Ronnie’s family members have launched a fundraising campaign in an attempt to raise £50,000 to fund the private purchase of ONC201 and other treatments.

Around £30,000 has been donated so far.

“We can’t thank everyone enough. Everyone has been amazing,” Mrs Hood said.

“Ronnie is absolutely amazing too. He’s so strong to deal with everything he’s had to go through and he’s still playing and having a laugh with his friends online.

“He’s truly an amazing little boy.”

Addenbrooke’s Hospital did not comment.