Boy told muscle pain was 'too much screen time' given months to live (2024)

A schoolboy has been diagnosed with incurable brain cancer - after a GP allegedly told him his muscle pain was caused by "too much screen time". Ronnie Hood, 11, was given just nine months to live in March after doctors discovered he had a diffuse midline glioma.

The Year Six pupil had been experiencing unbearable neck pain for a year, but his family claim a GP simply ordered physio - saying the issue was due to the gamer "playing on his phone too much". When his symptoms didn't improve, and physio exercises left him "crying in pain", Ronnie's parents Vicky, 50, and Nick, 58, pushed for an MRI scan.

Ronnie was finally examined in February - and his results revealed a tumour growing "like an octopus" on his brain stem near the top of his spine. Nick said that finding out his little boy had brain cancer was like "being hit by a bus".

He said: "Ronnie wasn’t getting any better. He cried in pain and frustration and then had a numbness in his right hand.

"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?"

Boy told muscle pain was 'too much screen time' given months to live (1)

Ronnie, from Sudbury, Suffolk, has already undergone surgery and radiotherapy, but other treatment options for his rare tumour type are limited in the UK. However, a drug called ONC201 is currently being trialled in the US and has shown promising results in fighting the mutation Ronnie has.

The family have therefore set up a GoFundMe to raise money to travel across the Atlantic and pay for the private treatment. They are speaking out ahead of Childhood Cancer Awareness Month, which takes place next month.

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. 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 £12,000 of a £50,000 target. Nick said the family is "touched" by the generosity people have shown.

"We have been touched by the generosity of donations already on the GoFundMe and appreciate any other contributions as there is still a way to go," the father said. Ronnie, who is unable to return to school, has been becoming more uncomfortable each day. He is on a high dosage of steroids in order to reduce the swelling around the tumour - but one of the major side effects is that this has caused his face and stomach to "blow up".

Boy told muscle pain was 'too much screen time' given months to live (2)

Relative 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. And all of this has happened at a time where Ronnie’s life is just getting started."

Brain tumours kill more children and adults under the age of 40 than any other cancer - but just one per cent of the national spend on cancer research has been allocated to brain tumours since records began in 2002. Ronnie's mum Vicky, dad Nick, and four older sisters have all been shocked with the lack of investment and research into the devastating disease.

Nick said: "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. We feel like we are clinging on to any hope which has been met with a lack of investment into research into the disease."

Charlie Allsebrook, community development manager at 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 improve outcomes so parents such as Nick and Vicky don’t face the reality of losing a child to a brain tumour.”

Brain Tumour Research funds sustainable research at dedicated centres in the UK and campaigns for the government and larger cancer charities to invest more in research, treatments, and finding a cure. To find out more about how you can support patients like Ronnie, please visit https://braintumourresearch.org/

To donate to Ronnie's GoFundMe, visit https://www.gofundme.com/f/sudden-brain-tumour-diagnosis-support-for-ronnie-age-11

Boy told muscle pain was 'too much screen time' given months to live (2024)
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