Edinburgh teen at risk of going blind 'within days' in fight for treatment
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A teenager will go fully blind 'imminently' if she doesn't receive desperately needed life-changing treatment to control her rare brain tumour.
Beau Johnston, 19, first lost part of her vision at age two after she was diagnosed with Hypothalamic Optic Pathway Glioma, a rare and slow-growing tumour.
She underwent surgery which removed a large chunk and went through eight rounds of chemotherapy to control it - but it has been constantly regrowing and damaging her vision.
Now she faces losing her eyesight fully if she doesn't receive urgent treatment to tackle a new tumour that was discovered attached to her optic nerve. The treatment she needs - which will stop the growth - is only available in the UK through trial which she isn't eligible for.
Her only options are to travel to the US and pay £26,000 a month or import the drug to the UK in the most cost-effective way.
Beau has started a crowd fund to help pay for a couple of months treatment - the family is also considering remortgaging their home to help hit the threshold.
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Beau said: "I could lose my sight today or in a couple of weeks - I have no idea. It is a frightening thought to have that one day I may be without my vision.
"If I lose it, I will lose part of my identity. I gamble with my life every time I go through chemo - it would be such a relief to have another treatment option available."
Due to her cancer Beau, of Edinburgh, says she is only functioning with 75 per cent of her eyesight.
She was diagnosed with the disease at two years old when mum Emma, 47, who is a doctor, noticed signs of a brain tumor when Beau fell of her bed which resulted in her vomiting.
(Image: SWNS)
Emma said: "I took her to the hospital where agreed there were signs.
"They conducted an eye test to look at the back of her eye. The doctors were concerned so she had an MRI scan where they found a 10cm tumor."
Subsequently Beau underwent a debulking surgery which removed the vast majority of the tumor in her brain. She has told how the doctors couldn't remove it entirely leaving two small growths which she has had treatment to control for the last 17 years.
The longest Beau had been without chemo is two and half years. Yet they continually grew which as a result has worsened her vision.
But unfortunately for Beau - in early April this year - she received the news of a third tumour which was sitting dangerously close to her last remaining optic nerve fibres which are keeping her vision intact.
Beau said: "I've had treatment for the last couple of years to prevent the tumours I already have from reaching this part of my brain. When I got the news that I had one in the exact location it was a real blow."
Beau is an aspiring lawyer studying law and French at Glasgow University - she says the thought of losing her eyesight fully has been "heartbreaking". She said: "I found out about the tumour in the middle of my revision period.
"Since it has been really difficult to be motivated and to take on the exams - it has impacted my studies. My mind has been racing with all the things I want to see, just incase my vision does go.
(Image: SWNS)
"I think about all the small things I'll lose out on like enjoying a sun set or watching my favourite band. I feel like I'm in a race against time to live my life."
Her family had hoped to secure the drug - Tovorafenib - that may save her sight. f she was to travel to the US the medication will cost her £26,000 a month to receive.
The drug comes in pill form and works by targeting and inhibiting the growth of the cancer. The drug is no longer available for compassionate access in the UK after being taken over by a new pharmaceutical company IPSEN.
Beau wasn't eligible for the trial of the drug as it was only available for new diagnosed patients. But Beau's family is working alongside the Scottish Parliament including MSP Angus Robertson and Health Secretary Neil Gray in a push for the drug to become available in the UK.
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Beau says the drug has had "amazing results" on people like herself who have had continuously growing cancers. It is hoped that the pill will prevent her from needing proton or radiotherapy which has implications of stroke memory loss, loss of vision, and changes to hormone function.
She said: "People have had theirs reduce and even stop growing completely after taking the drug. That is something which would be life changing for me.
"The side effects of the proton or radiotherapy are terrifying. If I could get access to the treatment it would mean the world to me would offer a better quality of life.
"The vision I have now even though it isn't a whole lot is what I want to keep. I am very independent - it will allow me to feel like a normal teenager and person in the future."
So far £35,000 has been raised to allow Beau to receive the treatment - they have an £80,000 target which will pay for a couple of months treatment and allow her to see if it works.
You can donate to her GoFundMe here.
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