Harrogate family launches 'first charity in the world dedicated to rarest cancer condition'
Millions of TV viewers were moved to see the mum of the late Liz Hatton on BBC Breakfast talking about the first official fundraising event of a new charity inspired by this remarkable schoolgirl.
Capture Desmoplastic Small Round Cell Tumour Charity is the first charity in the world dedicated to making a difference to those with this rare sarcoma and their loved ones.
Mum Vicky Robayna told the BBC that more research was "desperately needed" into the ultra-rare form of cancer which claimed her brave daughter Liz's life last November aged 17.
After being diagnosed with Desmoplastic Small Round Cell Tumour, a rare and aggressive sarcoma that affects just 12 people in the UK annually, Harrogate Grammar School student Liz refused to retire to her sick bed and dedicated the last months of her life to pursuing a photography bucket list.
Her talent – and bravery – made national headlines last year after she was invited to photograph an investiture by the Prince and Princess of Wales.
The images were published on the royal couple's Instagram page and Liz was also pictured being hugged by Kate at Windsor Castle.
The first fundraising event for the family’s new charity is called Splash and Stitch.
Running from June 20-21, the event includes a 24 hour sponsored swim and stitch.
Today, a BBC TV film crew visited the school of Liz’s beloved little brother Mateo to film him knitting and swimming as part of the inaugural Capture charity event called Splash and Stitch.
Vicky said:"Desmoplastic Small Round Cell Tumour is a really rare cancer and, because it's so rare, there's very little research for it or funding given over to it.
“Liz never said 'why me', she said 'let's make the most of every single second' and that is absolutely what she did.
"The charity aims to focus on ensuring that young people with a cancer that has less than a 15% survival rate live the best lives they can for as long as possible.
"It’s essential that palliative care is about living not dying.”