During his second year of university, Owen began experiencing unusual symptoms – his foot dragging while running and a strange sensation in his right hand. Initially dismissing it as fatigue, he soon realised something was wrong. An MRI scan revealed he had a brain tumour, later diagnosed as a grade 1 pilocytic astrocytoma, a slow-growing brain tumour typically found in young people. 

A few years after his initial diagnosis, despite undergoing multiple surgeries, radiotherapy, and facing numerous complications, Owen's condition remained challenging. When his medical team determined that standard chemotherapy offered little chance of success compared to the associated risks, his oncologist referred him to the Sarah Cannon Research Institute, part of HCA Healthcare UK, where he was given the opportunity to join a clinical trial.

Now, two years into the trial, Owen shares how it has stabilised his condition, renewed his hope for the future, and inspired him to advocate for brain tumour research.

A challenging start to treatment 

Shortly after his diagnosis, Owen underwent surgery at his local hospital to drain the cystic fluid and remove the tumour. However, the surgery proved more complex than Owen anticipated and only a small tissue sample could be taken for biopsy, whilst complications from the procedure severely impacted Owen’s mobility and speech.

“I woke up unable to speak or move, though I understood everything. When doctors spoke to me, I knew what they were saying but couldn’t respond. I knew the surgery hadn’t gone as planned—I couldn’t speak or move properly. My quality of life had plummeted, and I became very depressed. That Christmas was especially tough. On top of struggling with mobility, I was anxiously waiting for my biopsy results, unsure if my tumour was aggressive. The uncertainty was exhausting—my mind just kept racing in circles.”

Overcoming setbacks 

Despite this setback, Owen’s determination never wavered. Over time, he regained his speech and mobility, even setting himself a challenge to walk 15,000 steps just months after surgery.

“There have been real struggles along the way, but I’ve learnt I’m very determined. Over time I regained my speech and the movement in my right side. That March I challenged myself to walk 15,000 steps. Everything the doctors said I couldn’t do, I wanted to prove them wrong. And I did—I did it all. After that first operation, it was about whether I would even speak or walk again, let alone get back to uni. But I did go back and live with my friends, and in the end we all graduated together.” 

Innovating through adversity

Later that year Owen’s clinical team recommended proton beam radiotherapy, however this treatment did not have a significant impact on the tumour. Owen continued to experience recurring cystic fluid build-up and seizures which required multiple surgeries to drain the fluid. 

It was during this time that Owen, a promising product design student, combined his studies with the challenges of his condition, to create a stylish seizure protection cap, after rejecting the standard-issue helmet.

“I’ve had so many seizures, I’ve cut open my eyebrow, fallen in the shower, badly bruised myself. I was offered a seizure protection helmet, but I wouldn’t wear it because it was so obvious. So, as part of my degree, I designed something people like me would feel comfortable wearing—a casual seizure protection cap. It looks like a normal cap, but it’s protective. I won the gold award for Creative Conscience in the medical field for my design and was invited onto a panel to discuss it, which was amazing.”

A new hope - enrolling onto the clinical trial

Despite multiple surgeries to drain the cystic fluid, Owen’s condition persisted. His medical team determined that chemotherapy was not an option due to the risks involved. Knowing that Owen’s tumour had an alteration of the BRAF gene, his oncologist referred him to the Sarah Cannon Research Institute, part of HCA Healthcare UK. He was offered a place on a clinical trial testing a drug designed to slow tumour growth in patients with this specific genetic alteration.

“My oncologist said we could try another operation, or there was this trial. After everything—the surgeries, the proton therapy, the complications—I thought, ‘Let’s go for it.’ The operations hadn’t worked, the proton beam therapy hadn’t worked, so I thought maybe this would.”