Ben Price, from Welwyn, was diagnosed with a high-grade medulloblastoma, a brain tumour the size of a satsuma, in August 2016 when he was just two years old, after months of worsening balance issues, vomiting, and exhaustion that were initially dismissed as a virus. Following emergency surgery at Addenbrooke’s Hospital, Ben developed Posterior Fossa Syndrome, leaving him temporarily unable to move, swallow or recognise his parents. He went on to endure intensive chemotherapy, including high-dose treatment and a stem cell harvest & transplant. Today, Ben, aged 12, is in remission but lives with the long-term effects of treatment, including fatigue, balance difficulties, and hearing loss. His family now raises funds through events including Benny’s Ball to support Brain Tumour Research in its efforts to find a cure.
Here is Ben’s story, as told by his parents, James and Susanna…
Susanna:
James and I were busy parents, both working full time. I’m a patent attorney and James is a chartered accountant. We were living in Welwyn with our daughter Charlotte, who was five then, and Ben was two.
Ben had gone from being really good at walking, really good on climbing frames and playing in soft play, to all of a sudden just having accidents. He’d fall off a step or seem to lose his coordination. At first, we didn’t think too much of it. But it just kept happening.
We were juggling work and family life, and at first you just think, oh he’s tired, or he’s got a bug. You don’t think ‘brain tumour’.
We were on holiday in Singapore in 2016 and Ben was quite sick, vomiting, but then he’d be fine afterwards. There was no temperature. Initially we put it down to a bug. But it kept happening.
Ben was very sleepy in the afternoons, and we struggled to wake him up in the mornings. He was very grumpy and irritable. He was also saying his legs hurt and didn’t want to walk, so he wanted to be carried all the time.
We went to the GP first who initially thought it was a virus. But as things got worse, we were back and forth to A&E at Lister Hospital.
We kind of gave up on the GP and just kept going to A&E because we knew something wasn’t right.
Doctors at Lister finally agreed to do a CT scan. I was in the room with the radiologists, and when they asked me to leave, I knew they’d seen something alarming.
We were called into another room and told there was a tumour on Ben’s brain. It was pretty large, the size of a satsuma, which in a two-year-old is huge.
I was devastated, but weirdly, also kind of relieved that we knew what it was and that we could do something. For months we had been saying there was something seriously wrong and no one would take us seriously. I don’t think I really took on that he could die from this. For me it was a case of, right, what’s next, what are we going to do?
James:
We were blue lighted up to Addenbrooke’s and had no sleep that night. Around 6am the following morning we were presented with a form, and the surgeon explained that Ben must have brain surgery or he had only up to two weeks to live. You’re presented with a choice, but of course there is no choice.
We went down with Ben and they put him to sleep for the surgery. It was surreal. We kissed him goodbye and hoped for the best.
The surgery took about eight and a half hours, which felt like a lifetime of pacing and worrying. Because it was a Saturday, they had to pull in people who wouldn’t normally have been working. The anaesthetist came in on his day off and the senior surgeon delayed his holiday so that he could be there. When we took Ben down, there were about 30 people in the room. They managed to pull this massive team together at very short notice. It was the NHS at its best.
When the surgeon finally came out, he said it had gone well and they’d managed to remove almost all of the tumour, they took an aggressive strategy to maximise the potential for the tumour not to return.
Susanna:
Following the operation, Ben was in intensive care, in an induced coma for three days. It was Charlotte’s fifth birthday on 8th August and Ben was still in intensive care at that time. Friends rallied round so her party could go ahead because it was impossible to leave him.
When we were moved down to the C2 (paediatric) ward, that was quite scary. You see all the kids with no hair and feeding tubes. We’d never experienced anything like that. It was quite traumatic.
Then Ben was screaming all through the night because he had an infection and needed antibiotics.
It was at this point we realised Ben had Posterior Fossa Syndrome. He didn’t seem to know who we were and he couldn’t move. Our son was pretty much paralysed, and even swallowing was a challenge.
I found that particularly harrowing. It felt like Ben’s whole personality had disappeared.
James:
The surgeon had said it might take him a long time to get back to his old self, but we didn’t really know what that meant. We’d never heard of Posterior Fossa Syndrome. We actually learned more from a leaflet in the parents’ room from the Danny Green Fund than we did initially from the hospital.
Through the Brainbow service at Addenbrookes, Ben was able to access speech and language therapy and physiotherapy to support with his rehabilitation. They were amazing, not just for Ben but for us as well.
Susanna:
Ben was eventually diagnosed with a high-risk medulloblastoma with MYC amplification, which meant it was particularly aggressive. Because he was so young, they wanted to avoid radiotherapy, so they threw everything at the chemotherapy.
Ben had five cycles and then a high-dose consolidation round. They did a stem cell harvest and then gave the stem cells back to him at the end of that cycle. We were in isolation for six weeks on the C2 ward to avoid any risks of infection.
Chemo was brutal. Ben lost his hair. He had mucositis, which includes open sores in his mouth. He had infections and temperatures. We would be sent home and then Ben would spike a temperature, and we’d have to go back in for IV antibiotics.
I remember thinking, I really hope we can have Christmas at home. Thankfully, following one of the temperature spikes we managed to be discharged on Christmas Day itself. We didn’t know if Ben was going to survive or if he was going to be around for the next Christmas. It was really important for us to have that family time.
James:
You become institutionalised quite quickly from being in hospital for so long. You get into these habits without even realising it. You’re up all night changing nappies and sheets because of the amount of fluid going through on a drip, and one of the drugs meant that if it was left on his skin it would burn, so you had to bathe and change him constantly. It’s fairly relentless, but you just do what you absolutely have to do from moment to moment, and in a strange way it gives you a bit of structure to the day.
Ben finished treatment and we were discharged on 14th February 2017. We couldn't have been happier when his MRI showed no evidence of the tumour.
Since then, Ben has had regular scans, initially every three months, then every six months, and now yearly. His last scan was clear.
Now 12 years old, Ben continues to live with fatigue and balance issues. He has ataxia, so his reaction speed isn’t quick enough. His fine motor skills are affected and writing and typing are slower. Ben finds things like buttons and zips challenging. He wears hearing aids because of high-frequency hearing loss, and he also had eye surgery because one of his eyes was looking in the wrong direction after surgery.
But Ben’s improving all the time. Had we left it longer, he could have died in his sleep. They said we might have woken up one morning and Ben just wouldn’t have. It could have metastasised. We were lucky it hadn’t spread.
That’s why it’s so important for us to raise awareness of Ben’s journey and to support Brain Tumour Research in its efforts to find a cure.
Susanna:
I work in oncology now, and I appreciate that not enough money goes into research for brain tumours. I was disgusted when I found out that it’s one of the biggest cancer killers of under 40s, and yet such a small percentage of national cancer research funding goes into it. For me, that just seems wrong.
We don’t want people to experience what we’ve experienced.
With the support of James’ sister, Jen, we held the first Benny’s Ball in 2017, not long after Ben finished treatment. Everything was very raw. People were so moved by Ben’s story, and we raised £26,000.
This year we held a second Benny’s Ball in March to raise money for Brain Tumour Research again. Research like this gives families like ours real hope for the future. When Ben was diagnosed, we were thrown into a world of aggressive treatments and long-term side effects that still impact his daily life. Understanding how these tumours begin and finding kinder, more targeted treatments is so important, not just for improving survival, but for protecting children’s quality of life. We’re proud to support Brain Tumour Research in helping to drive this vital work forward.
If I could say anything to other parents, it would be to trust your instincts.
Take one day at a time. Just get through each day and tick those days off. And don’t be afraid to ask questions of your consultant(s) and doctors. You might think it’s a stupid question, but it won’t be and they’re there to help.
Susanna and James Price
June 2026
One in three people in the UK knows someone affected by a brain tumour. This disease is indiscriminate; it can affect anyone at any age. What’s more, brain tumours continue to kill more children and adults under the age of 40 than any other cancer yet, to date, 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 Ben’s story, donate via www.braintumourresearch.org/donate or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure.
