‘My dry eyes turned out to be sign of a brain tumour’
A woman who thought she had dry eyes has been diagnosed with an inoperable brain tumour.
Rachael Burns, 22, first started noticing changes to her eyesight after giving birth to her daughter, Raeya, now one.
The woman, from Belfast, had long suffered from migraines, but says these began to worsen in March 2023 which led her to see an optician.
"They said I had ‘dry eye’ and was doubly short sighted," she explains. "I was sent home with eyedrops and glasses which just made me feel dizzier.
"My eyesight worsened, leading to me walking 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. I felt like I was being dramatic, and this led to me waiting even longer to get help."
It wasn’t until Burns’ face lopsided and she was unable to open an eye that she was referred to hospital.
A subsequent MRI scan showed a high-grade cancerous tumour on her brain called a diffuse midline glioma (DIPG), that had already spread to her spine.
Doctors then delivered the news in May 2024 that Burns had just months to live – so now her family are hoping to raise £150,000 for life-extending treatment.
"When I was told I had a brain tumour my entire world fell apart," she explains. "I was told that the life expectancy of someone with my diagnosis was 12 months, and I had already been showing symptoms for eight.
"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."
Doctors told Burns that her surgery is not an option due to the tumour being located on her brainstem.
She is currently undergoing six weeks of radiation treatment on her brain and spinal cord.
"Some days I’ll wake up and my legs won’t work, and I’ll be crying in agony for hours at a time with the pain," she explains.
"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. Some days I can walk unassisted and I’m able to lift Raeya. All I can do is hope that I get as many good days like that as possible because memories with my family are all that matter to me now."
After doing some research, Burns and her family discovered the ONC201 drug which has been given to patients in Germany and prolonged patient’s lives by almost two years.
However, the cost of consultations, private scans, travel, accommodation, and the medicine amounts to £150,000 – of which half of the amount has already been raised.
"As hard as it is to ask for help, I’m really swallowing my pride and letting myself be vulnerable enough to beg for this extra time," Burns says. "I am not ready to leave my family and my baby.
"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."
Burns is also hoping that by speaking about her condition she can raise awareness for brain tumour research.
"There is not enough awareness and not enough funding put into brain tumour research when it is killing innocent children and young adults every single day and the world is going on as normal," she adds.
"If more people knew just how devastating the effects of brain tumours are on not just the person diagnosed but their entire family and everyone around them who loves them, maybe we could push for more options and more treatments as nobody deserves a fate this cruel."
Louise Aubrey, community development manager at Brain Tumour Research, said: "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."
To donate to Burns' fundraising page, visit: gofundme.com/f/3jrjd4
Additional reporting by SWNS.
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