Twenty-two year old Rachael Burns, from Belfast, was diagnosed with a diffuse midline glioma (DIPG) in May 2024, just months after her daughter’s first birthday. Rachael is undergoing radiation treatment and has been given a prognosis of just four months. With the support of the community, Rachael is seeking to raise £150,000 to help pay for potentially life-extending treatment in Germany.
Support Rachael's fundraiser here.
Rachael tells her story…
Since having my daughter Raeya in March 2023, I spent a lot of time at home and began to notice changes in my vision in my right eye shortly after. By the time Raeya was seven months old my right eyelid had begun to feel heavy, causing a lot of strain and double vision. I had experienced migraines for many years but during this time they intensified. I was left having to sleep the majority of my days to ease the pressure in my head and take multiple painkillers.
“I first contacted my GP about this at the end of December and was told to go to Specsavers.”
I was told I had ‘dry eye’ and was doubly short sighted in my right eye and sent home with eyedrops and glasses which didn’t improve my vision at all. The glasses just made me feel dizzier. My eyesight worsened over the next two months, 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, so I returned to Specsavers. I had multiple different eye tests and explained the severity of my symptoms but said they weren’t concerned enough to refer me to the hospital. I asked the optician, ‘can you not see the difference in the size of my eyes?’, to which he replied ‘No, not really’.
I then felt like I was being dramatic, and this led to me waiting even longer to get help. My right eye began throbbing very badly, and I then realised the right side of my face was partially paralysed and I couldn’t smile fully or raise my right eyebrow and family members thought I was having a stroke. I initially thought it was Bell’s palsy and contacted my GP again; I emailed photos of my face to show how the right side was completely lopsided and my eye would not fully open. I was seen the next day for my first physical check-up where I was then referred to urgent care at the Royal Victoria Hospital in Belfast as the doctor found my symptoms very strange.
After numerous physical exams from different doctors and nurses and the stroke team, I was eventually sent for a CT scan which showed a mass on my brain. This was a complete shock and very scary for me and my mother to hear. After a lot of hours of waiting I was eventually placed on a trolley bed in a corridor of the acute ward in the hospital on 14 May, 2024. I remained there for three days under a bright light with zero privacy. I needed to wear sunglasses to try and stop the strain in my eyes. All the while, I received no information on what was going on with me.
I was eventually given a room the next day and finally went for my MRI on 17 May. I found out that night that they had found a diffuse midline glioma brain tumour which was cancerous and had also spread down my spine.
“My entire world fell apart in that moment.”
I had to message my mummy and tell her I’d received the MRI results and to come to the hospital, I couldn’t give anything away over text as I knew she wouldn’t be able to drive safely if she knew.
“Waiting for my mother to come into that room was the hardest moment of my life. I wasn’t upset for myself, I was heartbroken that I was about to tell her that she was going to lose her daughter.”
I broke down as soon as I saw her and the fear in her voice when she hugged me and repeatedly asked ‘Oh, please Rachael, what is it? What is it?’ Being a mother myself now made all of it feel so much more painful as I couldn’t imagine being sat in that room with Raeya in my situation.
Due to the tumour being on my brainstem they cannot perform surgery or a biopsy or I would die due to how sensitive the location is and how it controls all of my body’s functions. On 6 June, 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 was told to try and make the most of the next four months.”
This was extremely difficult news to hear. As my family didn’t want to know a prognosis, I made my mum leave the room prior to this and 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. Any hope I had shrivelled up and it felt cruel even telling my family, so I kept it to myself for days. We were told the only treatment available for my tumour is six weeks of radiation treatment, 30 sessions on my brain and 28 sessions on my spinal cord.
I have begun the radiation treatment. So far, the biggest struggle has been my mobility.
“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 and like I’m already being stripped of a lot of my motherhood. Some days I can walk unassisted and I’m able to lift my daughter. All I can do is hope that I get as many good days like that as possible as memories with my family are all that matter to me now.
Due to the aggressiveness and scale of my tumour we just don’t know how effective the radiation will be. I’ve researched a lot of other young people with my diagnosis and radiation just didn’t work at shrinking their tumour at all.
We as a family set out to research and find any possible trials or drugs that might give me a chance. It is just so hard as the UK has very strict rules when it comes to experimental drugs so the NHS cannot recommend an unlicensed drug, or the doctors would be held liable if the treatment went badly.
We found the stories of so many others who have travelled to Germany for treatment options that aren’t available here. I found the story of Amani Liaquat through Brain Tumour Research and contacted her mother, Yasmin. Amani had no hope with her radiation treatment but when she began the ONC201 drug it began to shrink her tumour which helped prolong her life by 22 months. I would not have known this drug was even an option if it wasn’t for Yasmin and her kindness and urge to help me navigate all of this.
Between the cost of consultations, private MRI scans to send to doctors, travel costs, accommodation, and the drugs themselves costing thousands of pounds a month, we decided to set up a GoFundMe to even attempt to have some sort of shot at some extra time. We have raised an incredible amount of over £70,000 so far which is crazy coming from a small city in Northern Ireland and just shows the sheer generosity of the community around me.
We have been seeing other local young people with a similar diagnosis also travelling abroad for treatment and spending in the region of over €300,000 which is just crazy. I’m going to do everything in my power to spread my story far and wide to be able to raise enough money to give my daughter as much time with her mummy as possible.
“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.”
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’ll never see Raeya walk down the aisle and for what? Just bad luck? It isn’t fair.
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. Something needs to be done to help people in situations similar to mine.
“There is not enough awareness and not enough funding put into brain cancer research when it is killing innocent children and young adults every single day and the world is going on as normal.”
Brain tumours kill more children and adults under 40 than any other cancer and yet just 1% of funding is designated to finding cures. That is completely horrific and 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.
Support Rachael's fundraiser here.
Rachael Burns
July 2024
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they 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 this devastating disease since records began in 2002.
Brain Tumour Research is determined to change this.
If you have been touched by Rachael’s story, you may like to make a donation via www.braintumourresearch.org/donate or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure