When Liz Hatton’s mother saw her 16 year-old daughter losing weight and experiencing stomach issues, her first assumption was that her child had developed an eating disorder.
But the real culprit was a form of cancer so rare is that just 12 cases are diagnosed in England each year, and it has no standard treatment.
Now Liz, who captured the hearts of the nation during a touching meeting with the Princess of Wales, has died less than a year after her diagnosis of a desmoplastic small round cell tumour.
The hugely talented photographer slipped away in the early hours of yesterday at her home in Harrogate.
The teenager’s disease is an incredibly rare form of cancer that develops in the connective tissue, muscles, fat, nerves and blood vessels that surround organs in the abdomen and pelvis.
Symptoms of this kind of cancer are known to vary widely depending exactly where in the connective tissue the tumour emerges and how quickly it grows.
In Liz’s case the first sign of any trouble at all was innocuous — a simple shoulder pain in the autumn of 2023 which she dismissed as a consequence of lugging a heavy bag around each day.
Then came bloating, and it was then that her mother Vicky Robayna, a specialist autism teacher, started to get worried.
Liz Hatton (centre), from Harrogate, Yorkshire, was diagnosed with desmoplastic small round cell tumour a rare and extremely aggressive form of the disease in January. Her mother Vicky (right) initially thought some of the early symptoms could be a sign of anorexia. Pictured here Liz and her family with the Prince and Princess of Wales
But these concerns were centred on Liz’s mental wellbeing.
Vicky had observed her daughter lose weight over the previous months, and now with a seeming digestive issue, feared her daughter could have an eating disorder.
‘I was worried about anorexia to be honest, she’d lost so much weight over the summer with her GCSEs – she was anxious and wanted to do well – that I said you’re just putting a little weight back on,’ she recalled.
Liz, 16 at the time, had already made a GP appointment in January this year for the bloating when her health woes escalated with devastating speed.
The bloating became a very visible swelling in her abdomen and pain, which Liz initially had put down to her period.
‘It just didn’t make sense,’ Liz recalled earlier this year. ‘Am I still on my period, am I not? It was excruciating, I didn’t sleep for the entire night.’
Calling NHS 111 Liz was given an urgent non-emergency hospital appointment where staff there said the teenager could have an ovarian cyst, a relatively common condition that can be painful but usually resolves on its own without treatment.
Medics then advised her to contact her GP to arrange a scan.
The Princess of Wales pictured sharing a tender hug with Liz when they met at Windsor Castle in October and bonding over their shared love of photography
But the next day the pain became so agonising the family decided to go to A&E.
‘She was in so much pain, it was ridiculous,’ Vicky said.
Then, at midnight, after a barrage of tests and scans the true seriousness of the young girl’s condition came to light.
Doctors told the family Liz had masses on her liver and ovaries.
At this stage medics couldn’t say for certain these were cancer but the following day the family were given the grim news that it was indeed the disease.
This was devastating, but the family were buoyed by the fact that 85 per cent of childhood cancer patients survive their disease for five years or more.
Then three days later further tests revealed Liz’s cancer was the incredibly rare desmoplastic small round cell tumour and that five-year survival was 15 per cent.
Liz remembered bluntly asking doctors, ‘am I f*****?’, before apologising to her mother for swearing.
Liz was the star of the show as she attended an exhibition in her name last week
The answer from medics at the time was ‘no’ given her age and general health, but they didn’t shy from the fact that treatment would be gruelling.
It was at this time Liz was told she had somewhere between six months and three years to live.
‘Even at 15 per cent, I was like “she’s never been off school ill, she’s got an amazing immune system, she has a good chance”,’ Vicky recalled of that time.
What followed was 10 rounds of intensive chemotherapy, some 50 pills a day before Liz made the decision to stop treatment in September after the tumours stopped responding to the treatment.
She chose instead to spend her remaining time with her family, explaining that she wanted to ‘enjoy what time I have left, instead of spending it stuck in hospital and feeling even more terrible and ill with side-effects’.
As part of this she complied a ‘bucket list’ of things she wanted to do in her last months of life, which eventually reached the ears of the future king and queen.
Liz was invited by them to Windsor Castle to photograph an investiture William was holding and, to her surprise, asked to have tea with the couple afterwards.
Catherine, who has gone through her own cancer journey this year, was pictured giving Liz an emotional hug, although the pair pointedly didn’t discuss their respective experiences but focused on their shared love of photography.
Liz, who fell in love with photography as a young girl, would have ‘loved nothing more’ than her photographs being ‘seen one more time’. In honour of this, the Daily Mail is publishing this picture she took of her beloved Mateo
As a result of their meeting, the teenager was inundated with offers of support and was able to complete almost all of her bucket list, including photographing a London film premiere, holding her own exhibition and more.
The family have now started a Just Giving page saying they are making it their mission to raise money to fund research into desmoplastic small round cell tumour in Liz’s memory.
Speaking last night following Liz’s death, Vicky said the family were taking comfort from the fact that she had blazed such a trail in such a short space of time.
She said: ‘Our lovely Liz died in the early hours of this morning. She remained determined to her last.
‘Even yesterday she was telling me that I had better get nurses sorted so she could do more things.
‘She went out in a blaze of glory with almost everyone she cared out seeing her for the last time at her exhibition last week.
‘I could not be prouder of her. She has faced every day with unbelievable bravery. And now it’s our turn to do her proud and give her brother the life she expects us to.
‘She was never scared of dying but she was terrified of leaving him behind. It’s our job to make that a little easier for her.’
Vicky added that Liz, who fell in love with photography as a young girl, would have ‘loved nothing more’ than her photographs being ‘seen one more time’.
In honour of this, the Mail is publishing a picture she took of her beloved brother Mateo.
