Like many youngsters his age, 11 year-old Ronnie Hood, enjoyed whiling away many weekends playing video games on his phone.
So, when he began suffering from neck pain, his family GP suggested it must be due to strain caused by bending to look down at his phone.
But the actual cause was eventually revealed to be an incurable and deadly cancer that was growing 'like an octopus' around his brain stem.
Tragically the prognosis is poor and the boy fromSudbury, Suffolk, has been given just months to live.
Schoolboy Ronnie Hood, like may young people his age enjoyed playing video games on his phone
So when he began suffering from neck pain his family GP simply ordered him to see a physio saying it was because the 11-year-old was playing on his phone too much'. Ronnie pictured with a video game and the Nintendo Switch handheld gaming device
Ronnie had beenexperiencing unbearable neck pain for a year when his parents took him to see his family doctor.
The year six pupil was then referred to a physiotherapist for help with what was believed to be a repetitive strain injury.
But thesephysio exercisesleft him 'crying in pain' and, with no improvement to his symptoms, his parentsVicky, 50, and Nick, 58 requested an MRI scan.
This was carried out in February and revealed an octopus shaped tumour on his brain near the top of his spine.
Further analysis revealed it wasdiffuse midline glioma (DIPG) a rare type of brain cancer that onlystrikes about 20 to 30 children in the UK a year, mostly emerging in kids between the age of five and 10.
It grows in the midline, between the two halves of the brain, and kills the majority of those who get it within a year.
Only two per cent of patients are alive five years after their diagnosis. On average, patients diagnosed with DIPG can expect to survive for between eight and 11 months.
Nick said finding out his little boy had brain cancer was like 'being hit by a bus'.
'Ronnie wasn’t getting any better. He cried in pain and frustration and then had a numbness in his right hand,' he said.
'When we got the results of the MRI, we couldn’t believe the news that he had brain cancer. It was like we had been hit by a bus.'
'He’s a handsome, confident, and well-loved little boy who was fit and healthy. How could this be happening?'
Ronnie has already undergone surgery and radiotherapy but other treatment options for DIPG in the UK are limited.
However, his parents have pinned their hopes on a drug called ONC201 that is currently being trialled in the US and has shown promising results in fighting the specific type of tumour Ronnie has which as a mutation called H3K27.
They have set up a GoFundMe to raise £50,000 to travel across the Atlantic to pay for the treatment privately.
Nick, who runs a courier company, said: 'Ronnie has a rare mutation of this type of tumour which means there aren’t many options for treatment here in the UK.
But the actually cause was revealed to be an incurable and deadly cancer that was growing 'like an octopus' around his brain stem
Ronnie has already undergone surgery and radiotherapy but other treatment options for DIPG in the UK are limited
Ronnie, unable to return to school, is on a high dosage of steroids to reduce the swelling surrounding the tumour. But an unfortunate side effect of these drugs is that his face and stomach have 'blown up' as a result
'There is only so much radiation that he can have, and the oncologist said chemo is useless in his case.
'Currently, for Ronnie to be eligible for any other treatment the tumour needs to grow before anyone will do anything.
'This seems counterproductive. We are trying to be proactive in prolonging Ronnie’s life. We don’t want to sit around and wait for this to take our boy.'
So far, the GoFundMe has raised £14,000 of a £50,000 target.
Ronnie, unable to return to school, is on a high dosage of steroids to reduce the swelling surrounding the tumour.
But an unfortunate side effect of these drugs is thathis face and stomach have 'blown up' as a result.
Family Katy-Jade Church, who set up the GoFundMe page, said: 'At an age where he is starting to become particularly conscious of his looks, Ronnie is finding these side effects particularly distressing and is increasingly not wanting to see friends or leave the house.
'The steroids have also affected his ability to sleep and made him understandably irritable.'
Nick added: 'In the four months since Ronnie was diagnosed with DIPG his appearance has changed drastically.
'Although he can walk and talk, it’s becoming more and more difficult, and in March, the overwhelming side effects of the tumour and medication meant he stopped going to school.
'Nobody should have to face this devastation because of brain tumours, let alone a child.'
Charlie Allsebrook, community development manager at the charity Brain Tumour Research, said: 'It’s heartbreaking to learn of Ronnie’s diagnosis.
'It’s a stark reminder that brain tumours are indiscriminate; they can affect anyone at any age.
'It’s horrendous that patients and their families feel forced to take treatment into their own hands.
'If we are to find kinder treatments and eventually a cure for all types of brain tumours, we must invest in research in the UK to improved outcomes so parents such as Nick and Vicky don’t face the reality of losing a child to a brain tumour.'
