'I face going fully blind without new drug - I'm scared I won't see another sunset'
A family is calling on the Scottish Government to help save their daughter's sight by making treatment available on the NHS.
Beau Johnston, 19, has been left visually impaired after receiving treatment for brain tumours since she was just two years old.
She has undergone eight courses of chemotherapy and debulking surgery to continually shrink her hypothalamic optic pathway glioma.
The family has been told a new brain tumour is threatening her vision on the remaining optic pathway fibres.
They hope to be able to get a drug to be able to treat that – but it costs $35,000 (£26,000) per monthly dose.
Beau told STV News: 'Knowing there's medicine out there that could change my life, but is being held back due to money and legal issues, is devastating. It affects me so much. It isn't a business to me; it's my life.
'We're spreading the word as much as possible, hoping there's a route we can take to access and fund it.' STV News Beau and mum Emma at their home in Edinburgh
Beau, who studies law and French at Glasgow University, describes herself as roughly '75% blind'.
She has been on chemo for the past year – and she says it takes a gruelling toll.
'My body builds up tolerance to different medications, and I get really tired and nauseous. It's mentally draining, too.
'It's been quite a struggle to get through my first and second year of uni. It makes studying a lot more tiring than it would be otherwise.'
Despite 17 years of treatment, a recent scan revealed a new tumour on Beau's remaining functional nerve fibres.
She and her family hoped a 'promising' new drug in the United States, Tovorafenib, would help save her vision but they have been told it was no longer available for compassionate access in the UK after being bought over by a new pharmaceutical company.
It's a tablet rather than lengthy days spent in hospital.
The side effects are also not as serious as the potential ones of proton therapy, a form of radiation treatment that uses high-energy protons to target and kill cancer cells. STV News Beau Johnston and her family are fighting to saved her eyesight
'It's about balancing the risks – how much the tumour is growing, how much it will affect me, and whether the treatment is worth it for my quality of life right now.
'We're at a point where it's really threatening my sight, and we don't have an option but to treat it.'
Beau wants to enjoy new experiences like any other teenager – but her condition has put her life on hold.
She was set to go to Paris for her third year of university but she has been forced to rethink her plans.
'It's been horrible. I'm 19, and I want to enjoy university, travel, and do normal things that young people do, but this makes everything so much harder – especially with exams. It's a nightmare to concentrate with everything going on.
'There are situations where I'm walking with a friend, looking at a sunset and I think 'I might never be able to see that again.' It's so beautiful, and one day, that could be gone, and I'd never see it again.
'It's terrifying, thinking about all the things I might miss out on if I lose my sight. At this age, I haven't done as much living as other people and it's horrible to think of the things I might miss.' STV News Beau's mum Emma Johnstone
Mum Emma Johnstone says they are in a race against time to find accessible treatment before Beau loses what is left of her sight.
'We were hoping she was going to get off to Paris for her third year and be able to live a normal life, so it's been really hard for the whole family.'
She estimated the total cost of treatment would be up to around $350,000.
The family has launched a fundraiser and are looking into other funding options, such as releasing capital from their home.
She said she has written to manufacturer IPSEN, though the firm informed them the drug has not entered production yet.
The family's local MSP Angus Robertson has and Neil Gray are also raising the issue at Westminster, though Emma fears little else can be done.
'It's hugely frustrating and devastating to know that the timing is wrong for us. We don't have the time we need to preserve her vision.
'I think from a medical point of view, I understand the rules and regulations and why they're important – that drugs are tightly controlled. But when it's your child who's directly impacted by that red tape and those financial constraints, it's really difficult.
'I need to know we've explored that option and tried to get it.'
Health secretary Neil Gray said: 'Beau Johnstone is clearly an inspiring young lady, and I can appreciate why she and her family are seeking access to a treatment to maintain what eyesight she has left.
'Tovorafenib does not currently have a licence for use in the UK but the pharmaceutical company, Ipsen, are meeting with the Chief Pharmaceutical Officer to explore what options there are to urgently make Tovorafenib available to Beau.'
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