Young mum left with just months to live after finding out what cause of ‘dry eyes’ really was
A young mother has been left with just months to live after the true cause of her 'dry eyes' was discovered.
22-year-old Rachael Burns from Belfast, Northern Ireland had begun to notice changes in her vision not long after giving birth to her daughter Raeya, now one.
Rachael began noticing her symptoms back in March 2023, making an appointment at her opticians after getting frequent migraines. She would be told by an optician that she had 'dry eyes' and would now need to use eyedrops and prescription glasses.
However, Rachael's condition would continue to worsen, seeing her admitted to hospital in May 2024 after her face became lopsided and she was unable to open one eye.
Advert
It was here that she would learn the devastating news, she had a high-grade cancerous tumour called diffuse midline glioma and it had already spread down her spine.
What is diffuse midline glioma?
According to The Brain Tumour Charity, diffuse midline glioma (often shortened to DIPG) is an aggressive type of cancer which forms around the brainstem.
Symptoms can include double vision, problems swallowing, loss of balance and weakness in one or both sides of the body.
There is currently no effective treatment for the disease, due to its location in the brain, and prognosis for the disease is usually around one year.
Recalling the moment she was diagnosed with terminal cancer, Rachael said: "My entire world fell apart."
The young mum was devastated to learn that the average survival rate for patients with DIPG was around 12 months as she had already been suffering with symptoms for eight, meaning she may only have months left to live.
"I just didn't expect to receive news that awful. I'd hoped to maybe have at least a year or two."
She continued: "This hugely affected me mentally. I just sort of crumbled."
Doctors informed Rachael that she wouldn't be able to undergo surgery due to the location of the tumour and her best bet to extend her lifespan was to undergo six weeks of gruelling radiotherapy treatment.
Explaining the symptoms she deals with on a day-to-day basis, Rachael said: "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.
"My partner Robert has had to take over most of our daughter's care and it makes me feel so useless, like I'm being stripped of a lot of my motherhood."
After researching her cancer, Rachael discovered that radiation often isn't successful for shrinking the tumour, so now she is now looking fundraising to pay for experimental drug trials to prolong her life.
Her family are hoping to fly her to Germany to try the privately administered ONC201 drug, with overall costs projected to be around £150,000.
Her family are currently raising funds for her treatment via GoFundMe.
Speaking about the fundraiser, Rachael said: "As hard as it is to ask for help, I'm really swallowing my pride and letting myself be extra vulnerable enough to beg for this extra time.
"I am not ready to leave my family and my baby."
Speaking about Rachael's tumour, 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."
Rachael's GoFundMe can be found here.
Brenna Cooper