Emily's story – spinal cord tumour

In 2020, Emily was diagnosed with a rare, incurable spinal cord tumour. She was a fit and healthy 22-year-old, studying business psychology at Loughborough University, and hoped to become a primary school teacher after graduation.

Her mum Lisa said: “Emily came home from university in March 2020, when the lockdown happened for COVID-19. She started talking about having pins and needles in her feet but thought this might be caused by stress about exams.”

As the symptoms continued, Emily went to see her GP and was referred for an MRI scan in September.

Lisa said, “We were called in to see the scan and we could see that there was a really large tumour within her spinal cord. We came out of the room and I just burst into tears. Emily’s first reaction was to say, ‘I’m so sorry.’ But she had nothing to be sorry for. It was just so devastating for us all, but we tried to stay positive.”

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.

From when she was diagnosed, not once did she show any anger, bitterness, or self-pity and worried only for those around her. I was just so proud of her.

- Emily's mum

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