Teenager with rare brain tumour raising funds for lifesaving treatment

A teenager diagnosed with an extremely rare brain tumour is raising funds for lifesaving treatment.

Joscelyne Kerr, 19, was finishing school in 2023 when she noticed the pupil in her eye had expanded so much that the colour was barely visible.

In June that year, an optician believed it to be a rare neurological disorder called Adie pupil, but after her pupil grew larger and she began to experience double vision, she was referred to Ninewells Hospital in Dundee for a CT scan, and was told it was a tumour.

Ms Kerr, of Kinross, said: “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.

“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.

“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.

“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.”

Brain tumours are the leading cause of cancer-related deaths in children and adults under 40.

According to Brain Tumour Research, only 1% of national cancer research funding has been allocated to fighting them since records began in 2002.

The charity has organised a month-long programme of events to highlight the impact of the disease as Brain Tumour Awareness Month marks its 15-year anniversary.

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.”

She added: “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.”

She had six weeks of radiotherapy and chemotherapy in January 2024, but in March, scans revealed both had been ineffective, and the tumour was confirmed as AXPA, the only confirmed case in Scotland.

Due to the tumour branching, Ms Kerr was prescribed trial drugs Dabrafenib and Trametinib, targeted cancer treatments used to treat small cell solid tumours.

A follow-up scan showed the drugs had shrunk the tumour back to its chrysalis state.

Ms Kerr and her family are now raising funds for a trial drug named DCVax-L, which costs £250,000, in the hope that it can save her life.

It has only been tested on glioblastoma patients but shows promise on AXPA.

So far, she has raised nearly £100,000.

She said: “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.