Like many young people his age, 11-year-old Ronnie Hood enjoyed spending many weekends playing video games on his phone.
So when she started experiencing neck pain, her GP suggested it must be due to the strain she was experiencing when bending over to look at her phone.
But the real 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 from Sudbury, Suffolk, has only months to live.
Schoolboy Ronnie Hood, like many young people his age, enjoyed playing video games on his phone.
So when he started to suffer from neck pains, his GP simply ordered him to see a physiotherapist, 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 console
Ronnie had been suffering from excruciating neck pain for a year when his parents took him to see his GP.
The sixth-grader was referred to a physiotherapist for help with what was believed to be a repetitive strain injury.
But these physiotherapy exercises left him “crying in pain” and as his symptoms did not improve, his parents, Vicky, 50, and Nick, 58, requested an MRI scan.
This was done in February and revealed an octopus-shaped tumor in his brain, near the top of his spine.
Further analysis revealed that it was a diffuse midline glioma (DIPG), a rare type of brain cancer that only affects between 20 and 30 children in the UK each year and occurs mainly in children aged between five and 10.
It grows in the midline, between the two halves of the brain, and kills most people who get it within a year.
Only two percent of patients survive five years after diagnosis. On average, patients diagnosed with DIPG can expect to survive between eight and eleven months.
Nick said finding out his little boy had brain cancer was like “getting hit by a bus.”
“Ronnie wasn’t getting any better. He was crying in pain and frustration and then his right hand went numb,” she said.
“When we got the MRI results we couldn’t believe the news that I had brain cancer. It was like we had been hit by a bus.”
“He is a handsome, confident and well-liked boy who is fit and healthy. How can this possibly 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 which is currently being tested in the United States and has shown promising results in fighting the specific type of tumour Ronnie has, which is a mutation called H3K27.
They have set up a GoFundMe account to raise £50,000 to fly across the Atlantic and pay for 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 treatment options here in the UK.
But the real 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, who is unable to return to school, is taking a high dose of steroids to reduce the swelling surrounding the tumour. But an unfortunate side effect of these drugs is that his face and stomach have “exploded” as a result.
‘The radiation he can receive is limited and the oncologist said that chemotherapy is useless in his case.
‘Currently, for Ronnie to be eligible for any further treatment, the tumor must grow before anyone does anything.
“This seems counterproductive. We are trying to be proactive in prolonging Ronnie’s life. We don’t want to sit back and wait for this to take our son away.”
So far, GoFundMe has raised £14,000 of a £50,000 goal.
Ronnie, unable to return to school, is taking a high dose of steroids to reduce the swelling surrounding the tumor.
But an unfortunate side effect of these medications was that her face and stomach “exploded” as a result.
Katy-Jade Church Family, who founded the GoFundMe Page said: ‘At an age when he is starting to become particularly conscious of his appearance, Ronnie finds these side effects particularly distressing and is increasingly less keen to see his 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 dramatically.
‘Although he can walk and talk, it is becoming increasingly difficult for him and in March the overwhelming side effects of the tumour and medication meant he stopped going to school.
“No one should have to face this devastation from a brain tumor, let alone a child.”
Charlie Allsebrook, community development manager at the charity Brain Tumour Research, said: “It’s heartbreaking to hear of Ronnie’s diagnosis.
‘It’s a stark reminder that brain tumors don’t discriminate: they can affect anyone at any age.
‘It is horrendous that patients and their families feel forced to take treatment into their own hands.
“If we want to find milder treatments and ultimately a cure for all types of brain tumour, we need to invest in research in the UK to improve outcomes so that parents like Nick and Vicky are not faced with the reality of losing a child to a brain tumour.”
