A 22-year-old mother who was told she has just months to live after being diagnosed with a brain tumour is fundraising to pay for life-extending treatment abroad.
Rachael Burns from Belfast was told to “make the most of the next four months” after she was diagnosed with an inoperable diffuse midline glioma – also known as diffuse intrinsic pontine glioma (DIPG) – in May 2024.
“My entire world fell apart. 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,” she said.
Rachael first noticed changes in her vision shortly after the birth of her daughter, Raeya, in March 2023. She visited the opticians where she was given eyedrops and glasses which did not help. Her symptoms intensified and, after sending photos to her doctor showing how her face was lopsided with one eye unable to open, she was referred to hospital where an MRI scan revealed a high-grade tumour that had already spread down her spine.
As she undergoes six weeks of gruelling radiotherapy, Rachael is working with Brain Tumour Research to raise awareness. Together with her family, she is trying to raise £150,000 to pay for potentially life-extending treatment in Germany.
She added: “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.
“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. 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.”
To support the family’s crowdfunding, please click here.
To donate to help fund research to find a cure for all types of brain tumours, please click here.
Related reading:
- Rachael’s story
- Young mum who thought she had dry eyes suddenly told she had months to live (Mirror)
- What is diffuse midline glioma?
- Read about research we are funding to find new treatments for diffuse midline glioma
Published Monday 5th August 2024.