Liz Hatton, 17, hit the headlines when she was pictured hugging Kate while she was at Windsor Castle to take photos of William at an investiture ceremony.
She died in late November and her family are now raising money to set up the first charity dedicated to research into desmoplastic small round cell tumour (DSRCT) – the rare and aggressive sarcoma Liz was diagnosed with 10 months earlier in January.
As they gathered with her friends in her home town of Harrogate, to remember her life on Wednesday, her mother, Vicky Robayna said: “Seventeen-year-olds shouldn’t be dying because we haven’t spent enough money finding out how we can fix the problem.”
Mateo Robayna with a photograph of himself taken by his sister Liz Hatton, 17, ahead of a celebration of the life of the teenage photographer at the Doubletree By Hilton Harrogate Majestic Hotel & Spa. Picture: PA
Mrs Robayna said: “Liz died two weeks ago, and she very definitely didn’t want a funeral.
“She donated her body to medical research, and she wanted a party, not a funeral.
“So that’s what we’re here doing – an exhibition of her photos, eating her very favourite snacks, and hopefully raising lots of money to stop other families losing their children from desmoplastic small round cell tumour.”
Mrs Robayna said: “Liz was inspirational. She was brilliant, beautiful, humble, talented and the most modest person you could ever meet.
“She had no awareness of how incredible she was, and I think that’s a big reason why people fell in love with her so much, because she never understood the interest.
“She never was bothered about people knowing her name, she wanted people to see her photos, and she wanted to make a difference.”
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Scores of people arrived at the ballroom in the DoubleTree by Hilton Harrogate Majestic Hotel to view Liz’s photographs and to partake of her favourite snacks, including lemon drizzle cake, salt-and-vinegar Discos and international sweets.
As part of her bucket list, the Yorkshire teenager photographed comedian Michael McIntyre, circus performers, the Royal Ballet, models from the Storm Model Agency, London Air Ambulances from a helipad, hotel doormen, the red carpet at the MTV Europe Music Awards and joined acclaimed British photographer Rankin to lead a fashion shoot.
Mrs Robayna said: “Taking photographs changed Liz’s life and made the last 10 months of her life, and in particular the last two, the best of her life.
“She was so poorly, but she got up every morning with a smile on her face, looking forward to what she was going to do that day.
“If she wasn’t in hospital, she was out taking photographs.
“She never said ‘why me’, she said ‘let’s make the most of every single second’ and that is absolutely what she did.”
So far, the appeal started by Liz’s family has raised more than £40,000 towards its £100,000 target.
Mrs Robayna said: “The legacy we want Liz to have is of her kindness, her bravery and her determination, but also of her passion for making a difference to other people.
“Liz set us one final item on the bucket list, and that was to raise enough money to stop other people going through desmoplastic small round cell tumour with no effective treatment.
“So we’re going to launch the first charity in the world for desmoplastic small round cell tumour, and we’re hopefully going to make that worldwide to raise money to fund research and to support families going through the condition.”
She said there was less than a one-in-a-million chance of her daughter getting the disease, as only 12 people in the UK got it every year and 80 per cent of those were men.
Mrs Robayna said: “Liz lived less than 10 months from her diagnosis, not because we can’t find a treatment, but because there’s no funding for it.
“It’s so rare, so there’s no funding from governments, there’s no funding from pharmaceutical companies, no charities set up for it.
“The only funding that goes on is funded independently by parents, and it’s time to galvanise the troops and make it better, because 17-year-olds shouldn’t be dying because we haven’t spent enough money finding out how we can fix the problem.”
Liz’s eight-year-old brother Mateo showed people around the exhibition, pointing out a couple of pictures his sister had taken of him.
He said his favourites were ones Liz had snapped of her close friends.
Mateo said: “She was incredible. She was very kind to other people. She loved her sweets, she loved her Discos and she loved her lemon drizzle cake.”
Mateo said: “Really, this shouldn’t be happening to such young people, so please help. We want it to go straight to research.”
He said: “She would probably say right now ‘don’t care about me, care about other people, because I’ve already lost my life’.”
William and Kate expressed their sadness following Liz’s death, saying it was “an honour to have met such a brave and humble young woman”.
Donations can made at www.justgiving.com/crowdfunding/vicky-robayna.
