Teen in race against time to save sight as parents desperately fundraise for treatment in US
Beau Johnston, 19, could lose the rest of her eyesight after a second tumour was found last month by doctors. She has been battling a brain tumour since she was just two.
A Scots teen who has spent most of her life battling a rare brain tumour is now facing a heartbreaking fight to save her remaining sight—with her family urgently fundraising £80,000 for a drug only available in the US.
Beau Johnston, 19, from Edinburgh, was just two years old when she was diagnosed with Hypothalamic Optic Pathway Glioma —a rare and slow-growing brain tumour that has already stolen the sight in her right eye and left her with less than half a visual field in her left.
Currently, a Law and French student at Glasgow University, Beau was preparing for a year abroad in France when her world was turned upside down last month. A routine scan revealed a second tumour, dangerously close to the last remaining nerve fibres that allow her to see.
Her mum, Emma, 47, a doctor in Edinburgh, explained the devastating blow: "We were hopeful she could start a targeted therapy called Tovorafenib —it's a once-a-week tablet that's shown great promise in stabilising tumours like Beau's.
"But we've hit a wall. The trial she'd have been eligible for is closed, and the drug is no longer available in the UK under compassionate access after it was bought by a new pharmaceutical company recently. They're not liscened to provide the drug to the UK at the moment, and we haven't got the time to wait. We're in a race against time."
The only way to get the drug now is through the US, where the original pharmaceutical company still provides it. But it comes at a huge cost, $35,000 per month.
"We're stuck. We need to move fast and raise enough for a few months' supply to even see if Beau responds to it. It's devastating. She's come so far, and we finally have a treatment that might help—but it's just out of reach.
"There's so much red tape and it will take too much time. The time tragically a cost to people's lives. It's brutal but that's the reality."
The family is urgently trying to raise £80,000 to cover the cost of accessing the drug in the US. They've already written to the Health Secretary Neil Gray and relevant authorities, but even if a route opens up eventually, Beau can't wait —the tumour is already pressing on vital visual nerves.
Despite her medical battles, Beau has not let it stop her from achieving. She got straight As at school, was head girl, and now juggles university with advocacy work. She's a trustee in the Scottish Youth Parliament, the lead singer in her band Low Tide, and a passionate campaigner for childhood cancer who appeared in BBC Children in Need.
She also has two younger siblings, poppy, 17 and Hugo, 9, along with her dad, Colin, who is also a GP. Her mum says the family are doing everything they can—but time is running out.
"It's terrifying to think we might lose her sight—or worse—when there's a treatment that could make all the difference," Emma said.
"I was just thinking 'how on earth are we going to achieve this' because it's the time frame, the short time frame to be able to access the sums of money that we're talking about.
'You think about selling your house or taking out loans, but we just don't have time.
"I think Beau's got so much more to give and it would be tragic for her to lose her vision and her independence because we haven't been able to access the correct drug for her tumour.
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"It's not fun and it's not fun to have to go public either but we don't really have a choice.
"As a mum, I need to know I've tried everything."
The family is asking the public to support their crowdfunding page to help them give Beau the fighting chance she so desperately needs. To donate, visit here.
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