A student has been diagnosed with an incurable brain tumor 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 excruciating neck pain for a year.
But his family claims a GP simply ordered physiotherapy – saying the problem was due to the player “playing too much on his phone”.
When his symptoms didn’t improve and physiotherapy exercises left him “crying in pain”, Ronnie’s parents, Vicky, 50, and Nick, 58, pushed for an MRI.
Ronnie was finally examined in February – and his results revealed a tumor growing “like an octopus” on his brain stem, near the top of his spine.
Nick said finding out his son had brain cancer was like “being hit by a bus.”
“Ronnie wasn’t getting better. He cried in pain and frustration and then felt numbness in his right hand,” he said.
“When we got the MRI results, we couldn’t believe the news that he had brain cancer. It was as if we had been hit by a bus.
“He is a handsome, confident, well-liked boy who was fit and healthy. How could this be happening?”
Ronnie has already undergone surgery and radiotherapy, but other treatment options for his rare type of tumor are limited in the UK.
However, a drug called ONC201 is being tested in the United States and has shown promising results in combating the mutation that Ronnie has.
The family therefore created a GoFundMe to raise money to travel across the Atlantic and pay for 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 tumor, which means there are not many treatment options here in the UK.
“There is a limit to the amount of radiation he can receive, and the oncologist said chemotherapy is useless in his case.
“Currently, for Ronnie to be eligible for any other treatment, the tumor needs to grow before anyone can do anything.
“That 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 child.”
What is a diffuse midline glioma?
Diffuse midline gliomas are the second most common type of primary high-grade brain tumor in children.
They grow in the midline between the two halves of the brain.
Symptoms may be vague but may include:
- Headaches
- Nausea
- Fatigue
- Problems with walking, coordination, balance
- Weakness in the arms and legs
- Difficulty controlling facial expressions
- Speech problems
- Problems with swallowing and chewing
- Double vision
A patient’s prognosis varies depending on the tumor and how it responds to treatment, but the average life expectancy after diagnosis is less than a year – usually between eight and 11 months.
About 10 percent of people survive at least two years and only 2 percent live more than five years.
Diffuse midline gliomas affect around 25 children every year in the UK.
Source: The Brain Tumor Charity
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 would appreciate any further contributions as there is still a long way to go,” the father added.
Ronnie, who is unable to return to school, becomes more uncomfortable every day.
He is taking high doses of steroids to reduce the swelling around the tumor – but one of the main side effects is that it has caused his face and stomach to “explode”.
No one should have to face this devastation from brain tumors, least of all a child
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Relative Katy-Jade Church, who set up the fundraising page, said: “At an age when he is starting to become particularly conscious of his appearance, Ronnie is finding these side effects particularly distressing and increasingly doesn’t want to see friends or leave home.
“The steroids also affected his ability to sleep and made him understandably irritable.
“And all of this has happened at a time when Ronnie’s life is just beginning.”
Brain tumors kill more children and adults under 40 than any other cancer – but just 1% of national spending on cancer research has been allocated to them since records began in 2002.
Vicky, Nick and Ronnie’s four older sisters were shocked by the lack of investment and research into the devastating disease.
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‘HOLD 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 is becoming increasingly difficult and in March the devastating side effects of the tumor and medication meant he stopped going to school.
“No one should have to face this devastation from brain tumors, least of all a child.
“We feel like we are clinging to whatever hope has been fulfilled by the lack of investment in research into the disease.”
Charlie Allsebrook, community development manager at Brain Tumor Research, said: “It’s heartbreaking to hear about Ronnie’s diagnosis.
“It’s a stark reminder that brain tumors are indiscriminate; they can affect anyone, at any age.
“It’s horrible 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 that parents like Nick and Vicky are not faced with the reality of losing a child to a brain problem. tumor.”
Brain tumors are the deadliest form of cancer for children and young people.
Around 16,000 people are diagnosed every year in the UK. Only 12% survive beyond five years.
There have been no new treatments in almost 50 years.
Brain Tumor Research funds sustainable research at dedicated centers across the UK and campaigns for the government and major cancer charities to invest more in research, treatments and finding a cure.
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This story originally appeared on The-sun.com read the full story
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