Mum of student, 22, who died from rare spine cancer says death left ‘hole in heart’

A grieving mum vows to keep fundraising in memory of her remarkable daughter, who raised more than £10,000 for research into her condition in just 10 hours – which soared to £63,000 and has been climbing in the days since her death.

Talented and beautiful inside and out, university student Emily Parsons, 22, took her last breath surrounded by her family on May 6, 2021, at the Arthur Rank Hospice in Cambridge.

It was only months after being told the pins and needles she had mistaken for exam stress were caused by an incurable spinal cord tumour called a diffuse midline glioma – a type of cancer so rare it only affects 100 people a year in the UK.

Now, as part of Emily’s legacy of kindness, her mum Lisa and stepdad Paul, both 54, and her younger brother, Ben, 17, have vowed to keep her JustGiving campaign to fund research at Addenbrookes Hospital into her type of cancer going until at least the end of 2021.

Lisa, of Cottenham, Cambridge, a retired bank worker, said of her daughter, who was in her final year at Loughborough University in Leicestershire, studying business psychology with a view to becoming a primary school teacher when she fell ill: “Emily was kind.

“She always worried about other people, not herself. I was astounded and inspired by her strength and her courage.”

Lisa continued: “She had grace and dignity which shone out of her and not once did she complain or ask, “Why me?” Instead, she was grateful for the care she was given.”

Emily’s problems began in April 2020 when she noticed a strange ‘pins-and-needles’ sensation in her hands and feet, which she initially dismissed as being caused by the stress of her upcoming exams.

Ignoring the weird feelings, she joined her mum, brother and stepdad on holiday in Cornwall in July – with everyone blissfully ignorant to the fact that in a few short months she would be diagnosed with incurable cancer, which would see her paralysed and confined to a wheelchair by the end of the year.

Her symptoms worsening, in the autumn she sought medical help and was sent to a neurologist who ordered an MRI scan, which revealed a tumour embedded in her spinal cord.

Just five weeks later, further tests revealed that Emily, who had everything to live for, had an aggressive form of cancer that attacks the central nervous system.

And at the end of October 2020, she was given only a limited time to live.

“It was when we got that diagnosis that our whole world just stopped,” said Lisa.

According to the Brain Tumour Charity, diffuse midline gliomas – which are more common in the brain than in the spine – have an average prognosis of less than a year.

And by the time Emily passed away, the only part of her body she could still move was her head.

Yet Lisa and Paul, who, like his wife, retired from his finance job to help look after Emily, say she never once felt sorry for herself or let on that she felt scared.

“I would come down in the morning to give her breakfast and her medicine and make her comfortable,” said Paul.

“Looking at her, I would think how scary it must feel to have to depend on others for absolutely everything.”

Paul added: “She couldn’t even scratch her own nose by then, yet she never once said she was scared or complained.”

Rather than complaining, Emily decided to use the time she had left to raise money to fund research into her condition.

She remained invested in the fundraising, despite her deteriorating condition and loved reading about people’s efforts.

She was particularly touched when she heard how an eight-year-old boy called Harry had baked cakes and brownies to sell and raised £400 by himself for the campaign.

Writing on her JustGiving page before her death, Emily – who received invaluable support throughout her illness from the Arthur Rank Hospice – urged everyone to listen to their own bodies.

She wrote: “It took multiple GP appointments across several months before I was finally referred to a specialist.”

Emily continued: “I know that for my cancer, an early diagnosis would have been unlikely to make a difference to my prognosis but for other cancers, it could.

“We all know our own bodies so, no matter what your age, if something doesn’t feel right don’t delay seeking professional advice and don’t give up until someone listens to you.”

Since Emily created the page, a total of 2,200 people have donated through it, as well as leaving condolence messages for her shattered family since her death.

For Lisa, the pain of her loss is so severe it is physical.

She said: “I wake up in the morning and feel physically sick. I feel desperate over what we have lost.”

Cared for at home until the day before her death, when she was admitted to the hospice, Lisa and Paul’s days were filled with carers and nurses going in and out of their home, with their time also being punctuated by hospital appointments.

As well as losing Emily, instead of being busily involved in her routine, suddenly everything ground to a halt for her devoted family.

Lisa says the hospice’s psychology team have been an invaluable support to her, adding that her son, Ben, is desperately sad and missing his sister, but has been incredibly brave and is facing his loss with stoicism.

“I don’t feel angry and I never was,” said Lisa. “I feel desperately sad about what Emily went through – about what we all went through as a family – but she wasn’t angry, so we have no right to be either.”

Now, the family say that continuing Emily’s fund is giving them a focus – with all donations going directly to the research team at Cambridge’s Addenbrookes Hospital.

Scientists there are working as part of Cancer Research UK’s Children’s Brain Tumour Centre of Excellence – looking specifically at the mutations of the H3 K27M gene, which caused Emily’s cancer and causes similar tumours in the brain.

Knowing there had been no advances in treatment options for 40 years, Emily – who was very fit and went to the gym five days a week before falling sick – wanted to fundraise, hoping scientists might find a way to at least slow the progress, if not completely cure this rare form of the disease.

A service in celebration of Emily’s life is taking place on Monday, May 24, at All Saints Church, in Cottenham, Cambridge, with around 100 people expected to attend.

Paul will be reading a final message written by Emily for the funeral that she helped plan with her family.

Emily’s overriding message was to be kind to people and always give people a chance.

Recalling her final months, Lisa said: “Together, we all found a way to manage and adapted.

“When, at the end, Emily could not use her hands, she used voice control on her phone to send messages. We smiled, we laughed, and we had some really good times with her.

“Two weeks before she died, she and I visited the botanical gardens in Cambridge, because she had never been.”

Lisa added: “She was in a wheelchair and completely paralysed by then and because of her medication, she didn’t look the way she would have wanted to look, but she still posted that photo on social media to keep raising awareness.

“I thought that was really brave of her.

“I am so very proud of her, but I miss her, and the hole she has left in our hearts and our lives is immense.”

Manav Pathania, one of the scientists on the Addenbrookes research team – where the money Emily has raised will fund a senior scientist for one year to work on the search for treatments and a potential cure – praised her and her family.

He said: “The incredible fundraising efforts that Emily and her family devoted their time and energy to over the last few months – raising around £63,000 – has motivated us to commit to our work in a way that nothing else really can.

“In my lab, we study the genetic mutations commonly found in diffuse midline gliomas in order to determine their roles in tumour growth, and their potential as targets for treatment. This funding will help us unravel and understand how these tumours develop, so that we may soon discover more effective ways to treat this terrible disease.”