Schoolboy and keen gamer, Ronnie from Great Cornard, Suffolk, was told his muscle pain was caused by spending too much time on his phone. The 11 year old received physiotherapy for a year before he was diagnosed with a life-limiting diffuse midline glioma also known as DIPG at the beginning of 2024. Since his diagnosis in February, Ronnie has endured surgery and intense radiotherapy. Exhausting NHS treatment, his family set up a GoFundMe page to pay for private treatment overseas. As they explore options to prolong young Ronnie’s life, his parents, Nick and Vicky are working with Brain Tumour Research to raise awareness of the disease.
Here is Ronnie’s story as told by his dad, Nick…
It started with Ronnie describing a pain in his neck around May 2023. He is big into gaming and spent time on his phone, but he’s also a big fan of football and before his diagnosis was fit and active. The GP suggested Ronnie should stay off his phone to help try and improve things. We followed their advice but a couple of months later, things were very much the same.
Together, Ronnie and I worked through a list of physio exercises to try and alleviate the pain. We did things such as moving our chin to our chest and moving our head left and then right. We did that twice a day, before and after school.
“One morning Ronnie was in tears, crying because he was in pain and frustrated it wasn’t getting better.”
As well as gaming, Ronnie loves aeroplanes and at 11, he’d never been on one. I run a courier company which tends to be quiet around Christmas and New Year so decided to surprise the family with a holiday to Fuerteventura, Ronnie’s first trip abroad and first trip abroad and first time on an aeroplane.
I took a picture of him and his sister, Ella, opening an envelope surprising them with the holiday. It’s an image that is so very different from the boy that would be just a few months later based on a shocking change in his appearance due to his diagnosis.
Throughout the holiday Ronnie was quieter than usual and that’s when he became more unwell, talking about a pain and numbness in his hand. Another appointment with the physio saw Ronnie referred for an MRI scan on 20 February 2024.
We were called in for the results and told that Ronnie had a tumour, cancerous, ‘growing like an octopus’ on his brain.
A letter confirmed Ronnie had an incurable and life-limiting diffuse midline glioma (DIPG) H3K27 mutation. They gave us a prognosis of nine months, however with treatment it could be longer.
It felt as though we’d been hit by a bus.
“The oncologist said outright that chemotherapy is useless for this type of tumour to which Vicky, and I were astounded.”
On 5 March, Ronnie had an operation at Addenbrookes Hospital in Cambridge. Surgeons removed as much of the mass as they could which was tricky due to the way it was growing. Intense radiotherapy followed. A high dose over a week, which doctors explained is a treatment that Ronnie would have another round of and after that it would render ineffective.
We had a second opinion with a consultant from the Royal Manchester Children’s Hospital. They told us about a potential trial at Great Ormand Street Hospital in London (GOSH) called CAR-T. It’s a cell-based therapy that helps engineer a patient’s own immune system to fight cancer cells.
However, the fast and aggressive nature of Ronnie’s tumour, deemed it ‘too far gone’ to be eligible for this treatment.
We read online about a drug called ONC201 which is in a trial phase in America and has shown positive results in treating DIPG. The same drug is available on compassionate grounds via the NHS. Frustratingly, despite this, Ronnie is currently unable to access the ONC201 drug in this way as the criteria requires further tumour growth for him to qualify.
“Currently, radiotherapy has shown a reduction of the tumour, and we do not want to wait for the mass to get bigger.”
We find ourselves living in a nightmare. A horrific situation where, as a father, all I want to do is provide for my family, but this disease has stripped me of being able to do this. Treatment costs thousands of pounds and it’s with the overwhelming support and generosity of friends, family and strangers to our GoFundMe page that we have been able to get this far in trying to save our boy.
As our investigations into treatment continue, Ronnie remains on a high dose of steroids to keep him comfortable. As you’d expect from this type of drug, Ronnie’s appearance has changed, and our once confident little boy is now not as keen to leave the house and see his friends.
He is becoming less able to move parts of his body, with the help of a virtual reality (VR) headset he can still enjoy one of his favourite hobbies.
His friends are all enjoying their summer holiday knowing they will go back to school to be in Year 7, but we know that come September, Ronnie won’t be joining them.
We started to look at options abroad. At the beginning of August 2024, we had a private consultation with a doctor based in Frankfurt, Germany, who is extremely experienced at dealing with patients with the specific mutation of brain tumour that Ronnie has.
They prescribed him with Imipridone 201 (a bio-copy like ONC201) which works by blocking receptors on cancer cells which leads to the cell’s death. This drug alone costs almost 700 euros (around £580) per tablet with an importation tax on top, he will need three of those each week.
He’ll start ONC201 as soon as the medication arrives from Germany.
We’ve also applied to have a video consultation with a paediatric neuro-oncologist based in the USA who has a specialism in brain tumours.
From carrying out our own research, it seems as though other countries are way ahead of the UK in the availability of treatments for brain tumour patients.
Our hope is that during the meeting we can ensure that all options to prolong Ronnie’s life are being explored.
Since we received his diagnosis on 20 February, we’ve been met with disappointment and what feels like a changing of goalposts with Ronnie needing to meet very specific measures for each trial treatment.
It almost feels like you must wait until the person is at the end of their life before further treatment is even an option.
Our experience shows a clear lack of investment into research into brain tumours. Should there have been adequate finding made available for this area, we could be living a different story.
Nick Hood
Published September 2024
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet just 1% of the national spend on cancer research has been allocated to this devastating disease since records began in 2002.
Brain Tumour Research is determined to change this.
If you have been inspired by Ronnie’s story, you may like to make a donation via www.braintumourresearch.org/donate or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure