Liz Hatton: How family of Yorkshire teen photographer hope to change lives for others with rare cancer

Vicky reflects: “Liz was amazing. She never moaned, she never ever said why me? Why have I got cancer?...She accepted her fate but she wasn’t doom and gloom about it. She just got up every day and every single opportunity that came her way she jumped at it and wanted to do it, no matter how poorly she was feeling...To produce what she did under the conditions she did was just phenomenal.”

Liz hit the headlines when she was pictured hugging the Princess of Wales after being invited to take pictures of investiture recipients receiving honours from Prince William at Windsor Castle. She was much more comfortable behind the camera than in front of it but the Harrogate 17-year-old was determined to use any publicity to ‘do good’.

She wanted to create more awareness around Desmoplastic Small Round Cell Tumour (DSRCT). “She didn’t shy away from what was happening but she also didn’t let it define her,” Vicky says. “She was so determined in whatever way she could always to make a difference...She used what she was good at for good, as well as having a really good time.

"I often say if Liz could have seen how the end of her life turned out, she would have been much less scared at the beginning of her cancer diagnosis. She wasn’t scared of dying, but she was scared of being in pain at the end and she was scared of leaving her brother (Mateo) in particular with memories she might not want him to have - and leaving him full stop. But the last two months of her life were the brightest and the best.”

Liz died last November, 10 months after her diagnosis. Her family are now preparing to launch the first charity dedicated to research into DSRCT, having raised more than £63,000 towards the cause. “Liz would say ‘I’m dead now, stop worrying about me, get on with it and help other people’. That was very much who Liz was,” Vicky says.

“It’s not about creating a legacy for Liz,” she adds. “It’s about making a difference for other families in the future so they don’t have to go through the pain that we have.” On her Crowdfunding page, Vicky explains that DSRCT has no dedicated organisation fighting for funding and no recognised treatment protocol. Trying to find information about the cancer when Liz was first diagnosed was like “hunting for a needle in a haystack,” she says.

The first priority for the new charity will be to fund a researcher to pull together everything that is known about DSRCT into one place for patients and their families to access. Vicky also wants the charity to provide support for parents, offering a point of contact with others who have been in a similar situation and know about the condition. Whilst Liz, she says, “had the best medical team we could ever have hoped for” at Leeds General Infirmary, the charity will prioritise research into ‘kinder’ treatments and better outcomes “so that people who are diagnosed can live their life more fully for the time that they have”.

“If all the research had been done and there wasn’t a cure and Liz had died because there was no way of curing her, that would be easier to accept as a a family,” Vicky says. “But the reality is that very little research has been done.”

“There was less than a one in a million chance of Liz getting this (cancer),” she continues. “There was also less than a one in a million chance of her meeting a princess who’d just finished cancer treatment and the world going mad and becoming interested in her and her story. That has to have happened for a reason. We have to use that to do as much good as we can.”

Her daughter, Vicky says, had an enigmatic personality, a way about her that made people fall in love with her. It was coupled with hard work, dedication, and an undoubtable eye for photography, but humble Liz had no idea how talented she was. She grasped every opportunity she could, determined to get a good shot even when incredibly poorly. “Liz often said I was really unlucky to get cancer but since my diagnosis I’ve been unbelievably lucky and that’s how she saw it. She couldn't believe how lucky she was that people were being so kind.”

She wanted to pay forward that kindness and to make a difference to other people – and that is a mission her family is now determined to fulfil. “We are so unbelievably proud of Liz, every second of every day. We always were,” says Vicky. “How she approached life, how she never blamed anybody or got angry about her diagnosis, I’ll never know where she got that strength from…

"We followed her lead because she was incredible, she was passionate, she was kind and she was determined to make as many memories as she could, determined to leave behind as many photos as she could and she was determined to make a difference to others who came after. We couldn’t make a difference in time for Liz but we will make a difference for others.”

To support the campaign, visit justgiving.com/crowdfunding/vicky-robayna