Emily Parsons

4 min read

Emily, a Loughborough University undergraduate from Cottenham, Cambridgeshire, was formally diagnosed with a diffuse midline glioma in October 2020. She underwent a biopsy and debulking surgery, and one week of intense radiotherapy, but soon became paralysed from her neck down. She died just over six months after diagnosis, aged 22.

Here is Emily’s story, as told by her mum Lisa …

Emily was an undergraduate of Loughborough University when she was diagnosed. She was in her second year of studying business psychology and absolutely loving it. She was a very studious young lady and at 22 was really enjoying life and finding her way in the world. She was an avid gym-goer, tiny but incredibly strong, and really fit and healthy. Her plan was to be a primary school teacher. She absolutely adored children, that was her real love in life. She spent time in her gap year being a nanny and worked at a day nursery.

“She even wanted five children of her own.”

She came home in March 2020 for lockdown when the university closed. She was in the middle of studying for her second-year exams and, around April, started talking about having pins and needles in her hands and feet. She spoke to a GP over the phone and, between us all, we thought maybe she was suffering from stress. Emily got through her exams in June but the pins and needles didn’t go away. Again, she spoke to the GP who, when blood tests didn’t show anything, said she thought it might be an issue with her circulation.

“Emily told us she couldn’t feel her feet.”

We went on holiday to Cornwall when lockdown rules were eased in July, which is when Emily noticed her tummy was going numb as well. She went back and forward to the GP until one day in August an involuntary spasm caused her hands to claw up. The GP agreed that wasn’t right and referred her to a neurologist at Addenbrooke’s Hospital, in Cambridge. Emily had an MRI scan in September and we were asked to go to the hospital where we were told she had a really long tumour in her spinal cord. At that point there was no mention of the fact it was cancer because it’s really rare to get a primary spinal cord tumour, particularly at her age.

In October, Emily went back into Addenbrooke’s for a debulking surgery and biopsy. A week later, we were called in to see the oncologist who said she had a diffuse midline glioma (DMG) at the top of her spine with a really nasty H3 K27M mutation. We were told Emily had months to a few short years to live, which we were in no way prepared for. Emily asked the oncologist ‘am I going to die from this?’ and was told ‘yes, you are’. I was totally devastated to learn that it was terminal.

“We were given no treatment options other than palliative radiotherapy, which is a short course of radiation to try and reduce the size of the tumour and ease the pressure it was putting on her spinal cord.”

After a week in hospital, we brought Emily home to get her stronger for the six weeks of radiotherapy she was due to have. However, she collapsed after a week and lost the use of both her legs. We took her back to hospital for another MRI scan, which showed her tumour had grown so considerably that she now had just months or perhaps as little as a few weeks to live. We didn’t even know if she would make it to Christmas. Emily spent a week in hospital during which time she completed a course of intense radiotherapy and was put on high-dose steroids, which helped a bit. Sadly, at the age of 22, Emily returned home with a devastatingly poor prognosis. Within weeks she had become fully paralysed from her neck down. The tumour was growing so quickly that she lost the use of all her limbs, but she remained incredibly brave throughout. She died just six months later, in May 2021.

“Two weeks after being told she was going to die, Emily decided she wanted to fund a research project.”

It was clear that very little was known about her type of tumour, that treatment options didn’t really exist and that nothing had changed in that regard for more than 40 years. Her oncologist knew of a researcher at Addenbrooke’s who was investigating central nervous system tumours like hers. So, Emily became the first private funder and helped sign up a senior researcher, which is life-changing. Emily was determined that no other family should go through what we were going to in losing her.

She told us she wanted to start a JustGiving page and was thinking of setting her fundraising target to £10,000. We thought that was quite a lot but told her to give it a go. She dictated to me what she wanted to say because she wasn’t able to write and, incredibly, she managed to reach her target in just two weeks. It was up to £50,000 by Christmas, which was within the month. The steroids she was on made her blow up like a balloon but she wanted to use pictures of herself on the page to highlight how devastating brain tumours are, which I thought was really brave. Emily was a quiet, private individual. She wasn’t a social media girl and yet wanted to use social media to help raise awareness. Her main message was that people know their own bodies best and should get checked out if they feel something isn’t right.

“She knew, even if her tumour had been found earlier, it wouldn’t have changed things for her, but there are other cancers for which early detection makes a difference.”

We nursed Emily at home but she wanted to die in a hospice, so we moved her to one the day before she passed. By that time, she’d raised more than £65,000. After her death, her stepdad, Paul, and I held a charity fundraiser, with a silent auction and raffle, and raised the rest of the £125,000 needed to fund the researcher at Addenbrooke’s. I know Emily would have been really proud of us. Paul also ran the London Marathon for charity in Emily’s memory in 2022 and I’m now training to run it next year. I know I will never have a better reason to do it. When I’m running on dark, windy, wet days, Emily helps get me through it.

“Brain tumours, especially DMGs, are devastating.”

Often when people talk about their cancer journeys, they talk about the importance of having hope, but we had none from the off. In some ways that helped us come to terms with Emily’s diagnosis straight away because we weren’t clinging onto it. We did a lot of researching to see if there was anything going on around the world that could help her, and we had a couple of leads, but Emily’s deterioration was so swift there was no way we’d have been able to get her anywhere.

It's obvious to me that research is the key. We need to research treatments, even if just to prolong these young people’s lives before eventually curing the disease. This isn’t a world we wanted to be a part of but we are.

“It’s part of Emily’s legacy, and my role in paying tribute to her, to keep raising awareness and to keep shouting about the fact that something has to change.”

Lisa Smart

November 2023

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 Emily’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


If you have been touched by Emily’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

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