Great Cornard schoolboy, Ronnie Hood, to undergo experimental treatment, ONC201, as he battles brain tumour
The parents of a schoolboy diagnosed with incurable brain cancer have spoken of their heartbreak as they pin their hopes on an experimental drug.
Ronnie Hood, 11, from Great Cornard, was given just nine months to live in March after doctors discovered he had a diffuse midline glioma, also known as DIPG.
Mum Vicky, 50, and dad Nick, 58, had previously been told by doctors that his early symptoms of a stiff neck and numb fingers had been caused by video gaming on his phone.
The couple are now pinning their hopes on an oral drug called ONC201, used to treat serious pediatric and young adult brain tumours.
Chemotherapy and radiotherapy have so far proved ineffective for the type of aggressive tumour Ronnie has.
Mum Vicky said: “We had a Zoom call last Friday with a doctor in Frankfurt who said we could go ahead for ONC201. It was the news we had been hoping for.
“Ronnie is not good at the moment and mostly stays in his bedroom, where he now has an electric bed.
“We have our up days and down days and, though there is a lot to deal with, sometimes we just end up sobbing.”
ONC201 is currently being trialled in the United States and has shown promising results in fighting the mutation Ronnie has.
But the oral pills cost up to £700 each – and treatment for Ronnie could amount to around £4,000 a month.
The Year 6 Wells Hall Primary School pupil had been receiving physio for a year for his symptoms, before the shock diagnosis.
Doctors had thought the youngster was suffering because he was playing on his “phone too much”.
In January, the family cut short a holiday – Ronnie’s first trip abroad with his four sisters – due to the unbearable pain in his neck.
His parents pushed for an MRI scan in February, which revealed a tumour growing “like an octopus” on Ronnie’s brain stem, close to his spine.
DIPG is a rare, fast-growing and malignant brain tumour that affects the central nervous system.
It tends to occur primarily in children between five to nine years of age, but also in adults.
It accounts for 10 to 20 per cent of all brain tumours in young children.
Dad Nick, who runs a courier company, said: “Ronnie cried in pain and frustration.
“He wasn’t getting better and then he 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?”
Nick added: “Ronnie has a rare mutation of this type of tumour which means there aren’t many options for treatment in the UK.
“There is only so much radiation that he can have and the oncologist said chemo is useless in his case.”
The family have set up a gofundme page to help pay for the ONC201 treatmentprivately. The fund has so far reached £29,600.
Nick is also working alongside the charity Brain Tumour Research to raise awareness of the disease.
He said: “We have been touched by the generosity of the donations and appreciate any contributions as there is still a way to go.
“We are trying to be proactive in prolonging Ronnie’s life. For him to be eligible for this treatment, the tumour needs to grow before anyone will do anything.
“We don’t want to sit around and wait for this to take our boy.”
He added: “In the four months since Ronnie was diagnosed his appearance has changed drastically.
“Although he can walk and talk, it’s becoming 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.”
According to Brain Tumour Research, brain tumours kill more children and adults under the age of 40 than any other cancer.
Only one per cent of the national spend on cancer research has been allocated to brain tumours since records began in 2002.
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 a cure for all types of brain tumours, we must invest in research.”
To donate to the fund for Ronnie, click here, or visit www.gofundme.com and search for Ronnie Hood.
It is Childhood Cancer Awareness Month (CCAM) this September.
Brain Tumour Research funds sustainable research at dedicated centres in the UK. It alsocampaigns for the Government and larger cancer charities to invest more in research into brain tumours in order to speed up new treatments for patients and, ultimately, to find a cure.
