Edinburgh family in desperate race to get treatment in US for teen with cancer

Edinburgh Live

15-05-2025

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An Edinburgh mum is hoping to fundraise £80,000 to get her daughter life-changing cancer treatment in the US - that could save her vision.
Beau Johnston was first diagnosed with brain cancer when she was just two, and despite 17 years of chemotherapy, along with surgery, the tumour has left her visually impaired.
Now 19, the Glasgow University Law and French student has had eight courses of chemo to continually shrink her Hypothalamic Optic Pathway Glioma. Unfortunately, recent scans following her last chemotherapy regime showed a new tumour sitting on her remaining visual nerve fibres.
Her mum, Emma, told Edinburgh Live: "Over the years, she's usually managed to get 18 months to two years before she starts another chemo regime because the tumours grow and start to threaten things. The original tumour took away her sight in the right eye and left her with only half of the visual field in the left eye and took away one of the branches of circulation in the brain but with the vision she's got, she's done remarkably well.
"She got straight As at school, she was head girl, she got into study Law and French at Glasgow University and she managed, despite chemotherapy last year, to get through."
Over the years, Beau has also raised awareness of childhood cancer, appearing in this year's BBC Children in Need campaign, is an active member and trustee in the Scottish Youth Parliament, and is the lead singer in her beloved band, Low Tide.
(Image: Supplied)
Her mum said: "She's done eight courses of chemotherapy in total, when her tumours have grown again and got to the stage where they're going to be pressing on vital structures and causing problems so she's had a rough time over the years and we were hoping it was going to get better.
"She was going to transition into adult services for her ongoing care and the scan that was done, which is five months after her last chemo regime stopped, has shown a brand new tumour. Unfortunately that's sitting right on her remaining visual nerve fibres and is causing a little bit of reaction that they can see on scans. It's already irritating those fibres that allow her to see."
Beau and her family thought a new drug in the United States, Tovorafenib, would be the key to saving her vision but after they were told about the new tumour, they also received the devastating news that the drug had been bought by a new pharmaceutical company and was no longer available for compassionate access in the UK.
Emma continued: "She needs to find treatment to try and prevent her from losing her sight and turning blind and to control the growth of her brain tumours to prevent further damage to her health. If she doesn't, the tumours are likely to continue to grow, taking away her remaining vision, firstly, rendering her blind, and continuing to cause further damage to healthy brain tissue and function.
"We're completely stuck. We were hoping to be able to try [Tovorafenib] but the problem is we just cant access it in the UK at the moment. We've contacted IPSEN (the pharmaceutical company) and they're stuck, there's nothing that they can do because they aren't even in production of it themselves yet."
(Image: Supplied)
Emma has been left with no other choice but to go public and fundraise the money she will need to either take her daughter to the states to access the drug, or to import it to the UK- both of which will cost a significant amount of money.
While there's no guarantee that the new drug would work for Beau, the trials have given the family hope. Without it Beau will have no choice but to try radiation or proton therapy, both of which are known to have long term side affects.
She continued: "It's a new drug, we don't know the long lasting side affects like we do with the other drugs or the proton or radio therapy, so we're not comparing like with like in terms of knowing what the long term affects are but on paper the initial results look very promising and I think increasingly Cancers will be treated by targeting the mutations that are allowing them to grow.
"The problem is that because it's brand new, it's incredibly expensive because the company has to cover their research and development costs.
"I think we all understand that but its heart-breaking when you know that essentially there's a drug that might be able to help treat her and save her vision with hardly any side affects, as opposed to a traditional, older fashioned treatment that we know will have side effects."
"If it does work that would be amazing, if it does work and shrink it down that would be fantastic. We're in a difficult position and I think the thing that's been really hard is that we thought this was available but we've been caught with the drug changing hands."
The fundraiser is the family's Hail Mary. While they've tried to think of other ways to get the money or access the vital medication, they need to get the funds together in just a few weeks and they're quickly running out of time.
Emma added: "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 can sell your house but you just can't do it in this time frame, and I wouldn't have that equity in it. It's just difficult.
"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.
"It's not fun and it's not fun to have to go public either but we don't really have a choice. I need to know I tried everything I can do as a mum to try and get the drug for her."
The drug alone costs £35,000 but they also need funds to get them there - or get the medication here. Emma is asking for help in getting as close as possible to the £80,000 mark, as soon as possible.
You can find more information on Beau, and donate to the fundraiser, here.