21
Dec
‘We’ve lost our daughter, but we can change things for other families’
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“Liz had been the healthiest human known to man – she never had time off school”, Victoria Hatton said.
Liz Hatton was 16-years-old when she was diagnosesd with a rare and aggressive sarcoma called desmoplastic small round cell tumour. It is so rare that only 12 cases are recorded each year.
The former Harrogate Grammar School student died aged 17, just 10 months after her diagnosis in February, on November 28.
Her death has been felt locally and nationally – and it is clear it will continue to be felt by many people for a long time.
Her mother spent the last few months of Liz’s life ensuring her daughter lived them to the fullest. After sharing Liz’s photography bucket-list on social media in May, the post went viral, and the Hatton family was inundated with opportunities for Liz.
She was hugely talented and captured the likes of the Prince and Princess of Wales; comedian Michael McIntyre; famous drag queens; actors; the Royal Ballet; a film set and more. Just five days before her death, Liz even photographed the red carpet at the Royal Variety Show.
Her mother has also since set up a fundraising page, which you can donate to here.
But Victoria, who spoke to the Stray Ferret after Liz’s death, said her world came crashing down on that dreaded February day.
Liz and the Hatton family with Prince and Princess of Wales. Credit: Kensington Palace
The diagnosis
Liz complained about a sore shoulder last December. Her parents put it down to carrying a heavy school bag and decided to keep an eye on it over the Christmas holidays.
Liz then mentioned feeling bloated, but the family thought it may have been from eating a bit more over the Christmas period. Her periods also became more painful, which continued even after her period had finished.
But Victoria said her and her husband Aaron, known as Liz’s papa, noticed the bloating wasn’t subsiding and decided to go to Harrogate A&E.
She told the Stray Ferret:
They thought it might an ovarian cyst. We were advised to see a GP on the Monday – this was the Saturday – but by Sunday morning she really didn’t look very well. She was in a lot of pain and couldn’t really eat. We went back to A&E, and they did a bladder ultrasound that evening, which was when they found free fluid in her abdomen.
They then did a CT scan. We were taken to gynaecology and told she had several masses in her abdomen. The word ‘cancer’ wasn’t banded around at this point, but we could tell by their faces that it wasn’t good news.
At 9am the following morning, Victoria received a call from the gynaecologist who had seen the family the night prior.
“They said they’d spoken to Leeds [Children’s Hospital] and everyone agreed that is was cancer”, Victoria said.
A biopsy was taken the following day and by the Thursday the family received the diagnosis. Within a week, Liz started chemotherapy.
Despite the heartbreaking news, Victoria said the medical staff who cared for Liz were exemplary. She told the Stray Ferret they allowed her to live life to the fullest and encouraged her to "find the rainbows".
But despite their efforts, there are no treatments specifically for desmoplastic small round cell tumour. Instead, treatments for ewing cancer are used.
In a world of mass information at the click of a button, we asked Victoria what it feels like to fall short of answers. She said:
I was just constantly terrified. We stayed awake for days and days looking for information. There was an overwhelming fear of missing something that’s out there that could save her. We just thought, ‘there has to be something we’re missing’.
It was like finding a needle in a haystack trying to find any information on it. There’s no one designated place to find out about DSRCT – there is no charity in the world dedicated to it.
Right from day one there wasn’t a chance she’d survive. But there just isn’t the knowledge out there because the pharmaceutical companies that fund most of the research aren’t interested in funding desmoplastic small round cell tumour because it’s not financially interesting enough, as the cases aren’t frequent enough.
Venom: The Last Dance premiere. Credit: Liz Hatton.
Victoria said it "isn't good enough that money isn't being spent on research" and asked herself had more funding been in place, would things have been different for her daughter?
Her family will now spend their lives making sure it is different for others. She told the Stray Ferret:
We’ve lost Liz – we can’t do anything about that – but we can change things for others. We can make sure other families don’t go through the agony we do.
The next steps
Victoria told the Stray Ferret the family will set up a charity dedicated to desmoplastic small round cell tumour.
She said the vast majority of funds raised by the charity will be channelled through the Children’s Cancer and Leukaemia Group to specifically fund desmoplastic small round cell tumour research. The remaining small amounts will be used to create a website and maintain the charity.
Following Liz’s death, she launched a fundraising page to raise £100,000, which will be used to collate the limited data available into one accessible document. She hopes this can then be used by physicians as more research into the condition is done.
Victoria added:
Once we’ve done that and we figure out where the gaps are, we hope to then fund research into treatments. We'd like to fundraise in a multitude of ways. We know friends and family are look for ways to help, so we’re hoping to raise as much money as possible, as quickly and as sustainably as possibly. We just want to make a difference long-term.
We’re better when we’re busy and being proactive. We can either sit and cry a puddle, or we do something. It feels wrong that there’s all this attention and we don’t use it for good. That’s what Liz would’ve wanted.
Credit: Liz Hatton
Victoria said her daughter had no idea how incredible she was, which she feels made Liz even more special.
Liz never complained, she never said she didn't want to do something and never told people 'it hurts', her mother said.
"She never asked, 'why me?'. She just accepted her fate and lived her life to the fullest."
Between Christmas and New Year, the Stray Ferret will be publishing a series of the biggest stories that shaped 2024. One of those articles will be about Liz. Please look out for it.
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