Emily underwent surgery in October and the biopsy revealed the tumour was a diffuse midline glioma, with a H3 K27M mutation. On the day of the results, Emily was informed by the consultant that the tumour was incurable.
Lisa said: “When we came out of hospital after her surgery in November, she was able to walk for about a week and then she lost the use of one of her legs and had to be readmitted to hospital. Further scans revealed the tumour had continued to grow rapidly and we were told Emily only had weeks to short months to live.”
Emily was cared for at home by Lisa, her stepdad Paul, younger brother Ben and boyfriend Nico, as well as receiving amazing support from the Arthur Rank hospice.
Emily tragically died on the 6th May 2021, aged just 22.
After she was diagnosed, Emily fundraised to support a research project at the Cancer Research UK’s Children’s Brain Tumour Centre of Excellence at Addenbrookes Hospital in Cambridge. A joint project between Cancer Research UK, GOSH and Brain Research UK, specifically studying tumours in the Central Nervous System in children and young adults with the same rare mutation that Emily had.
Emily raised an incredible total of £100,000 – 10 times the initial target that she had set.
Emily’s family are now supporting Stand Up To Cancer to help raise awareness and further funds for research in her memory.