Help This Harrogate Mum Launch a Charity to Support Research Into a Rare Tumour
A mum from Harrogate is fundraising to raise awareness and improve research on desmoplastic small round cell tumour in memory of her daughter, who lost her battle with this rare form of cancer
‘Liz’s story is quite different to the ones you often hear, because in our case treatment was remarkably fast,’ says Liz’s mum Vicky Robayna. ‘We had a diagnosis of desmoplastic small round cell tumour by the Thursday and she started chemotherapy the following Friday. In the middle of that, she had a PET scan. The NHS did her proud but the reality with her cancer is that there isn’t a set treatment protocol because it’s so rare. There are little pockets of research but they tend to be funded by families. There’s currently no charity solely focused on desmoplastic small round cell tumour, creating awareness and researching it.’
Liz always loved taking photographs and set up a photography bucket list after she was diagnosed. ‘I’ve got photos of her as young as two with a camera in her hand and another one around her neck,’ Vicky recalls. ‘If you had a camera, she wanted to get her hands on it. She wanted to get her primary school to start a photography project when she was in Year Five and she saved up £300 for her first proper camera and bought that in Year Six. She chose her secondary school on the basis that they offered GCSE and A Level photography, and it was always her passion.’
Liz was studying for her A Levels when she became ill and, while she wasn’t able to continue studying, Richard Cattermole (a photographer at Getty Images) gifted her a new, professional camera and spent time teaching her how to operate it. ‘He mentored her throughout the rest of her life, and instigated the exhibition [of her work] that we held for her in London [hosted by British Land and Getty Images] before she died,’ Vicky says.
‘We made a photography bucket list and I said “how about I post it online” and she said “you can do what you want Mum, because no one’s going to reply”. But afterwards she always laughed and said I got it right that time! Thousands of people reacted and shared it and we were lucky enough to make so many of her dreams come true by the kindness and generosity of so many people sharing, commenting and liking.’
Liz was invited to Windsor Castle in October, where she met the Prince and Princess of Wales and photographed Prince William at an investiture. Her bucket list experiences included working on a fashion shoot which she was helped to do by Rankin, working alongside photographers at the premiere of Venom: The Last Dance, and shooting a portrait of Michael McIntyre.
In Liz’s memory, Vicky is now fundraising to launch a charity to support those with desmoplastic small round cell tumour in their family, and make looking for information about the cancer feel less like ‘finding a needle in a haystack’.
‘When Liz was diagnosed we spent hours, days, weeks scouring the internet trying to find any piece of information,’ Vicky says. ‘We emailed doctors around the world just trying to glean any bit of information we possibly could. We want to end that part of the stress and anxiety for parents by bringing this information into one place, and we also want to raise money to fund research into the cancer because so little is out there.
‘The initial target has been set at £100,000 which we’ve been advised should be enough to give us the funds to get someone to look at the research body that already exists and to provide a useful document for doctors and patients to look at which treatment protocols are currently effective, how, where and why, but also to allow them to think about which avenues are promising and haven’t been explored far enough. We can then look to see the natural areas to fundraise for.
‘Alongside that we also want to offer support for families and patients and give people a way of connecting with each other because that’s really difficult. I think I, particularly out of all of us, found that really hard. The other people on the ward had a very different experience to us because more of them had a very different treatment protocol and a very different prognosis. In the early days that made us feel really alone, as if there was no one who got it. We want to make sure that for people who do want to connect with others in a similar situation, we’ve got mechanisms in place to allow them to do that.’
