When Liz Hatton’s mother saw her 16-year-old daughter lose weight and develop stomach problems, her first assumption was that her child had developed an eating disorder.
But the real culprit was a form of cancer so rare that only 12 cases are diagnosed in England each year, and there is no standard treatment for it.
Now Liz, who captured the hearts of the nation during a moving meeting with the Princess of Wales, has died less than a year after her diagnosis with a desmoplastic small round cell tumor.
The hugely talented photographer slipped away from her Harrogate home in the early hours yesterday.
Teenage disease is an incredibly rare form of cancer that develops in the connective tissue, muscle, fat, nerves and blood vessels surrounding organs in the abdomen and pelvis.
The symptoms of this type of cancer are known to vary greatly depending on where exactly in the connective tissue the tumor originates and how quickly it grows.
In Liz’s case, the first sign of any problem was harmless: a simple shoulder pain in the fall of 2023, which she dismissed as the result of lugging a heavy bag every day.
Then came the bloating, and that’s when her mother Vicky Robayna, a specialist autism teacher, started to worry.
Liz Hatton (centre), from Harrogate, Yorkshire, was diagnosed in January with desmoplastic small round cell tumour, a rare and extremely aggressive form of the disease. Her mother Vicky (right) initially thought some of the early symptoms could be a sign of anorexia. Pictured here is Liz and her family with the Prince and Princess of Wales
But these concerns were focused on Liz’s mental wellbeing.
Vicky had watched her daughter lose weight over the past few months, and now with an apparent digestive problem, she feared her daughter might have an eating disorder.
‘To be honest, I was worried about anorexia. “She had lost so much weight last summer with her final exams – she was anxious and wanted to do well – that I said you just put the weight back on,” she recalls. .
Liz, then 16, had already made an appointment to see her GP in January this year due to bloating, when her health problems escalated with devastating speed.
The bloating became a very visible swelling in her abdomen and pain, which Liz had initially attributed to her period.
“It just wasn’t right,” Liz recalled earlier this year. ‘I’m still on my period, aren’t I? It was terrible, I didn’t sleep all night.’
Liz called NHS 111 and was given an urgent, non-emergency appointment at the hospital where the staff there said the teenager might have an ovarian cyst, a relatively common condition that can be painful but usually goes away on its own without treatment.
Doctors then advised her to contact her GP to arrange a scan.
The Princess of Wales pictured herself sharing a tender hug with Liz when they met at Windsor Castle in October and bonded over their shared love of photography
But the next day the pain became so painful that the family decided to go to the emergency room.
“She was in so much pain, it was ridiculous,” Vicky said.
Then, at midnight, after a barrage of tests and scans, the true severity of the young girl’s condition was revealed.
Doctors told the family that Liz had masses on her liver and ovaries.
At this stage doctors could not say for sure that this was cancer, but the next day the family received the grim news that it was indeed the disease.
This was devastating, but the family was heartened by the fact that 85 percent of childhood cancer patients survive their disease for five years or more.
Three days later, further tests revealed that Liz’s cancer was the incredibly rare desmoplastic small round cell tumor and that the five-year survival rate was 15 percent.
Liz recalled asking the doctors bluntly: ‘am I an asshole?’, before apologizing 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 the doctors at the time was ‘no’ given her age and general health, but they did not shy away from the fact that the treatment would be grueling.
It was at this time that Liz was told she had anywhere from six months to three years to live.
“Even at 15 percent, I thought, ‘She’s never been sick from school, she has a great immune system, she has a good chance,’” Vicky recalled of that time.
What followed was 10 rounds of intensive chemotherapy, around 50 pills a day, before Liz made the decision to stop treatment in September after the tumors stopped responding to treatment.
Instead, she opted to spend the remaining time with her family, explaining that she wanted to “enjoy the time I have left, rather than spend that time in the hospital feeling even more horrible and sick to feel the side effects’.
As part of this, she fulfilled a ‘bucket list’ of things she wanted to do in her final months of life, which eventually reached the ears of the future king and queen.
They invited Liz to Windsor Castle to photograph William’s investiture and, to her surprise, she afterwards asked to have tea with the couple.
Catherine, who has been through her own cancer journey this year, was photographed giving Liz an emotional hug, although the pair pointedly did not discuss their respective experiences, instead focusing on their shared love of photography.
Liz, who fell in love with photography as a young girl, is said to have ‘loved nothing more’ than for her photographs to be ‘seen one more time’. In honor of this, the Daily Mail publishes this photo she took of her beloved Mateo
As a result of their meeting, the teen was inundated with offers of support and was able to complete almost her entire bucket list, including shooting a film premiere in London, holding her own exhibition and more.
The family has now started one Just give a page They say they are making it their mission to raise money to fund desmoplastic small round cell tumor research in Liz’s memory.
Speaking last night after Liz’s death, Vicky said the family took comfort in having paved such a path in such a short time.
She said: “Our dear Liz passed away in the early hours this morning. She remained determined to the end.
‘Yesterday she told me that I had better get nurses so she could do more things.
‘She went out in a blaze of glory with almost everyone she loved seeing her for the last time at her exhibition last week.
‘I couldn’t be more proud of her. She has faced incredible courage every day. And now it’s our turn to make her proud and give her brother the life she expects from us.
‘She was never afraid 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 for her photos to be ‘seen again’.
In honor of this, the Mail publishes a photo she took of her beloved brother Mateo.