Charlie Quarterman

4 min read

Computer game and Marvel film-fan, Charlie from Syresham, Northamptonshire, was diagnosed with a diffuse intrinsic pontine glioma (DIPG), more recently referred to as diffuse midline glioma (DMG), in March 2024. The shock discovery was made after parents, Sophie and Clive, noticed their 11-year-old struggled to close his right eye. Initially put down to Bell’s palsy, further investigation revealed an inoperable and cancerous mass growing in his brain stem. As the family make memories to fulfil Charlie’s wish list, Sophie wants to raise awareness and highlight the injustice of the lack of research funding into the disease. 

Charlie Quarterman In Hope story


Here is Charlie’s story as told by his mum Sophie…

Having a son with brain cancer has taught me there is a cruel and unfair split of research funding into this disease compared to other cancers. All the money in the world won’t help Charlie now, but as a family, we can raise awareness so that future generations aren’t told to go home and make memories.

Our nightmare started two months ago, in March 2024. Charlie was getting ready for bed when we noticed he had trouble blinking with his right eye. He used to have lots of worries at bedtime and we wondered if this was a physical sign of his anxiety.

"The next day, he still couldn’t blink, and was using his hand to manually close his eye lid."

I can’t explain it, but something wasn’t right with him. He wasn’t himself. I thought perhaps Charlie could have Bell’s palsy which would explain the lack of movement on one side of his face. We ran through tests, asking him to blink - which he did but only his left eye lid moved. We asked him to smile, but only the left side moved, and his smile was crooked. When he tried to move his eyebrows, only the left one raised and the same happened when he tried to wriggle his nose. At this point, he could however, raise his hands overhead, stick his tongue out and he walked okay.

Charlie in hospital

I phoned NHS 111 who recommended we take Charlie to Horton General Hospital in Banbury. After parking the car, Clive and I watched Charlie struggle to walk, stumbling like he was drunk, towards the hospital entrance. We felt panicked.

The A&E doctor carried out the same tests Charlie did at home and seemed to agree it was probably Bell’s palsy. Charlie was placed on steroids and given eye drops, pending an appointment with the eye hospital, and we left, expecting a referral to ophthalmology.

"Less than a week later, to our surprise, Charlie was asked to go in for a scan."

His school life had been disrupted due to his symptoms, he was desperate to go back. The doctor told us she had noticed Charlie’s eye flickering during the initial appointment – something we hadn’t– and she advised us Charlie would need an urgent MRI scan at John Radcliffe Hospital (JR) in Oxford.

My mind was racing, they were going to find a tumour. Around 20 minutes into the scan, the atmosphere changed when they injected a dye into Charlie’s body and kept him in the machine for longer.

My senses became heightened. I was hyperaware of everyone’s reactions around me. I told Clive to prepare himself for news that our son had a tumour. We were both led to a side room and told Charlie had a lump in his brain stem that shouldn’t be there.

"They told us it was inoperable and incurable, advising us to ‘go home and make memories’. Clive broke down. I was in shock."

We explained as best we could to Charlie, who in 2023, was diagnosed with autism spectrum disorder (ASD) which caused him to struggle in the neurotypical world. However, in the space of a year, he has overcome so many barriers and grown in confidence, only now to be hit with this.

He was able to process that he has a lump that he should not have in his brain - which he stated was a tumour. He understood he needed a medicine to help try and get his face working properly.

He was so brave and managed everything. It amazed us, considering the level of anxiety he has had to learn to cope with that previously presented such a barrier.

"He asked me if he was going to die but I couldn’t face giving him a yes or no answer."

I said that we were going to try different medicine. He replied, ‘but I could die’. The only response I had was that we were going to try and shrink it.

We were led by Charlie in telling other members of our blended family of 12 children. Clive and I told the older children and Charlie wanted to tell his younger brother and sister – something a child should never have to do. His courage is something we have definitely taken strength from.

Charlie before his brain tumour diagnosis

From being diagnosed on the 22 March, Charlie’s condition deteriorated quickly. His mobility was reduced and he needed a wheelchair for longer distances due to loss of balance and stumbling.

On 27 March, during a CT scan at the JR to determine co-ordinates for the biopsy, doctors noticed a build up of fluid on Charlie’s brain and he had a shunt fitted which extended the amount of time he was in surgery.

After the operation his symptoms further progressed; he lost the ability to walk and sit for a long time, as well extreme fatigue and slurred speech. His vision became doubled which meant he couldn’t message his friends, and he lost his independence but still, he got on with it.

The consultant told us that as radiotherapy could offer some relief to Charlie’s symptoms and he has already regained some mobility.

Charlie In Hope brain tumour patient

His once lovely long hair, which caused old ladies to comment how lovely it was, had to be cut short, which made Charlie upset.

Less than three weeks later, we were in University College Hospital in London (UCL) where Charlie had his face mask moulded, in preparation for his 13 sessions of high-dose radiotherapy. This treatment saw Clive and I move to London temporarily for two and a half weeks. On 22 April, we could return home. Much sooner than if Charlie would have had the usual six-week protocol which is typical for most patients.

Young patient having radiotherapy

We know Charlie has a DIPG and we are waiting for the histology results to tell us of the specifics of Charlie’s cancer. There are various mutations; knowing this may help inform any further treatment options available to him, including clinical trials.

Brain tumour patient radiotherapy mask marks

"As Charlie works through treatment, he wrote a bucket list of things he has always wanted to do."

Many of them include lions as he always imagined a career as a zoologist. My stepson encouraged us to setup a crowdfunding page to help us achieve these goals and we received tens of thousands of pounds in a matter of days.

On the list, Charlie wrote: hold a lion cub, feed lions, zoo keeper experience, family meal at Five Guys and Wendy’s, beach holiday with cousins, Hawaii holiday, theme park, comic con - big one, pet chicken, pet chihuahua, go back to school and be with my friends, sushi meal, wreck a room - rage room session, churros, zoo day out, gang up with brothers on Alissia (big brother rights) and be in a movie.

Charlie brain tumour patient holding a new pet dog

Charlie made a comment, ‘promise me you’ll look after mummy’ to his uncle Mark, my brother as they built a den together amongst the chaos of Charlie’s diagnosis and treatment. This demonstrated what a kind and caring boy Charlie is.

We find it difficult to comprehend that there is no life-saving treatment available on the NHS. Options are bleak and there seems to be politics amongst drug companies in holding onto potential life-saving treatment that could benefit brain tumour patients because the financial backing isn’t there to make it worth their while. That’s disgusting.

We have read endless stories of people that are travelling for treatment and trials abroad and we know of a phase one immunotherapy trial at Great Ormand Street Hospital (GOSH).

We lose over a class of children each year due to this type of brain tumour. We don’t want to sit here not doing anything, which is why we must step up to ensure our voices are heard for those fighting this disease.

Sophie Quarterman

May 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.

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