Joscelyne Kerr, 19, was diagnosed with an extremely rare brain tumour and has been given a prognosis of 12-18 months – but she is fundraising for life-saving treatment
A teenager grappling with a life-threatening brain tumour is on a mission to secure funds for vital treatment.
Joscelyne Kerr, 19, was wrapping up her final school year in 2023 when she observed a dramatic change in her eye—the pupil had become so dilated that the iris was virtually indiscernible.
Initially, in June of that year, an optometrist considered it might be a rare neurological condition known as Adie’s pupil. But as Joscelyne’s pupil further enlarged, coupled with bouts of double vision, she was sent to Ninewells Hospital in Dundee for a CT scan, which revealed a more sinister issue—a tumour.
Ms Kerr, from Kinross, shared a startling insight: “My dad used to be a medic in the Army and joked he’d only seen this happen on three types of people: someone who had a stroke, a drug addict and a dead person.”
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Given that none of these scenarios were applicable, the family initially didn’t take the symptom too seriously—until Joscelyne’s condition deteriorated. “So, as none of these applied, we didn’t think much of it at first until my symptoms worsened. After a second optician’s visit a few weeks later, they referred us to the hospital, where a CT scan found a shadow in my brain.”
What came next was alarming; the urgency of her situation intensified after an MRI identified what was thought to be a schwannoma tumour on her third ocular nerve. “An urgent MRI then revealed what they thought was a schwannoma tumour on my third ocular nerve. This type of tumour is rare, but having it located on the third ocular nerve sheath is even more unusual, with only about 60 known cases worldwide.”
Originally believed to be low-grade and slow-growing, the tumour’s sudden and aggressive development prompted her medical team to act swiftly. “At first, they thought it was a low-grade tumour and had been growing slowly for years, but as my symptoms were changing every few weeks and getting worse, we insisted on getting scanned again sooner.
“After celebrating my 18th birthday and starting my university course, we were shocked to find the tumour had doubled in size and was growing aggressively.”
Ms Kerr’s tumour began spreading towards the brain stem, which was once considered an inoperable area due to the risks. She had two options: radiotherapy or high-risk surgery, aiming to remove it entirely. She opted for surgery, and in December 2023, she underwent an operation which removed 90% of the tumour.
Due to complications, she experienced memory and muscle function loss, and had to relearn how to speak, read and write. Four days later, her body shut down and she was unable to respond to pain or movement Eventually she regained all functions, but she then received further bad news.
Ms Kerr said: “After a biopsy, doctors diagnosed me with an ultra-rare and cancerous tumour, with a prognosis of 12-18 months. They weren’t sure if it was an epithelioid glioblastoma (e-GBM) or an anaplastic pleomorphic xanthoastrocytoma (APXA), but they knew it was serious.
“Although 90% of it had been removed, the remainder – a crystallised mass – was wrapped around my carotid artery, the main blood supply to my brain. It was devastating, but my mum stayed calm and told me, ‘It’s just a number’. My grandparents had outlived grim prognoses before so we refused to give up.
“I was told I needed to undergo chemotherapy and radiotherapy, and figured if this was going to be my last Christmas, then we would make it the best one ever.”
With the tumour spreading, Ms Kerr was put on experimental medications Dabrafenib and Trametinib, which are designed to combat small cell solid tumours. Miraculously, a later scan indicated that these drugs had reduced the tumour back to its original size.
Overwhelmed by the support, she expressed: “I’m overwhelmed by the outpouring of love and generosity I’ve experienced since all of this happened. My community has done marathons, gym days, black-tie events and so much more to support me. I couldn’t be more grateful to everyone.
“I am also focused on raising awareness about brain tumours, and it’s exciting to see the new Brain Tumour Research centre has recently opened in Edinburgh, near my university flat. We desperately need more research in this disease because I believe the treatments people receive aren’t always the right ones, and it’s only with well-funded research that we can change this and save thousands of lives.”
To back Ms Kerr’s immunotherapy fundraiser or to contribute to her cause, click here.
