SHOCK MISDIAGNOSIS
Boy, 11, told by doctors he was ‘gaming too much’ actually has an ‘octopus’ tumour and months to live
His heartbroken parents are making a desperate plea to save his life
A SCHOOLBOY has been diagnosed with an incurable brain tumour after being told his symptoms were 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.
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The year six pupil, from Sudbury, Suffolk, 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.
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Nick said that 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?"
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Ronnie 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 United States and has shown promising results in fighting the mutation Ronnie has.
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The family have therefore set up a 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 in September.
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."
What is a diffuse midline glioma?
DIFFUSE midline gliomas are the second most common type of primary high grade brain tumour in children.
They grow in the midline between the two halves of the brain.
Symptoms can be vague, but can include:
- Headaches
- Nausea
- Fatigue
- Problems with walking, coordination, balance
- Weakness in the arms and legs
- Difficulty controlling facial expressions
- Speech problems
- Issues with swallowing and chewing
- Double vision
A patient's prognosis will vary depending on the tumour and how they react to treatment, but the average life expectancy after diagnosis is less than a year - usually between eight and 11 months.
About 10 per cent of people survive at least two years, and only two per cent live beyond five years.
Diffuse midline gliomas affect around 25 children every year in the UK.
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So far, the GoFundMe has raised more than £13,000 of a £50,000 target.
Nick said the family is "touched" by the generosity people have shown.
"We appreciate any other contributions as there is still a way to go," the dad added.
Ronnie, who is unable to return to school, has been getting 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 tummy to "blow up".
Nobody should have to face this devastation because of brain tumours, let alone a child
Nick
Relative Katy-Jade Church, who set up the fundraising 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 them since records began in 2002.
Vicky, Nick, and Ronnie's four older sisters have all been shocked with the lack of investment and research into the devastating disease.
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'CLINGING ON TO ANY HOPE'
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 tumours are the most deadly form of cancer for children and young people.
Around 16,000 people are diagnosed every year in the UK. Just 12 per cent survive beyond five years.
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There have been no new treatments in almost 50 years.
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.
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