Niamh Spence
A mum who thought she was suffering from a simple issue with her eyes has been dealt a devastating blow as she discovered she's got just months to live.
Rachael Burns, from Belfast, Northern Ireland, began suffering with 'dry eyes', and noticing changes to her eyesight, after she became a mum to daughter Raeya.
Alongside her dry eyes and worsening vision, the migraines she had previously suffered with returned and felt worse.
Seeking health advice from her optician, she was told it was most likely 'dry eye' and given eyedrops and glasses to help.
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At one point the new mum's face appeared to droop and become lopsided, and she found she wasn't able to open one of her eyes. Referred to Belfast's Royal Victoria Hospital, she was given an MRI scan which revealed the terrible news.
Rachael was diagnosed with a high-grade cancerous tumour, known as diffuse midline glioma (DIPG), and unfortunately it had already begun to spread down her spine.
Told the devastating news by her doctors, Rachael has been given just months to live.
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Rachael said: "I was told that the life expectancy of someone with my diagnosis was 12 months, and I had already been showing symptoms for eight."
She continued: "I just didn’t expect to receive news that awful. I’d hoped to maybe have at least a year or two. This hugely affected me mentally. I just sort of crumbled."
Rachael's symptoms first started to show in March 2023, and forced her to spend days in bed with migraines as her eyesight slowly got worse. She explained: "My eyesight worsened, leading to me walk in front of cars due to the blind spot on my right side.
"I could no longer take my daughter out of the house on my own as I was so worried I would put her in danger.
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"I felt like I was being dramatic, and this led to me waiting even longer to get help."
It wasn't until over a year later in May 2024 when Rachael received her diagnosis, after being referred to urgent care. Unfortunately for her, she wasn't eligible for surgery as the tumour was located on her brainstem.
The 22-year-old is now facing gruelling treatment with six weeks of radiation treatment that has left her 'crying for hours at a time with the pain', as she explained: "My partner Robert has had to take over most of our daughter’s care and it makes me feel so useless, like I’m already being stripped of a lot of my motherhood."
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The family have now been exploring other options that might help Rachael, and they've discovered the ONC201 drug, which is in private use in Germany, and has been proven to extend patients' lives by two years.
However, to pay for the medical costs, Rachael and her family are hoping to raise £150,000 via a GoFundMe page and they're already over halfway there.
Rachael shared: "I am not ready to leave my family and my baby.
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"One year is not anywhere near enough time to get to experience the gift of motherhood and have it stripped from you.
"I may not get to take her to her first day of school but any extra days with her will be a blessing so I will fight with everything in me to wake up to her each morning."
Louise Aubrey, community development manager at Brain Tumour Research, explained: "It’s a tragedy that a young mother like Rachael cannot get the best drugs and treatment in the UK, and instead has to spend hundreds of thousands for the chance to spend more time with her daughter.
"Brain tumours kill more children and adults under the age of 40 than any other cancer, yet just 1% of the national spend on cancer research has been allocated to brain tumours since records began in 2002.
"This is unacceptable. So much more needs to be done to prevent young families like Rachael’s from being ripped apart by this devastating disease."