Video report by Tim Backshall.
Cumbrian fundraiser and Pride of Britain winner Jodie Vasquez, from Currock in Carlisle, has died aged 25.
She had been fighting a life-limiting condition since she was 16 years old.
Ehlers Danlos Syndrome is a rare and incurable disease, which affects the collagen and connective tissues in the body. It eventually leads to multiple organ failure.
Jodie had to be fed intravenously and attached to a drip for fifteen hours a day, but despite this she was still determined to raise money for good causes.
Jodie was a prolific fundraiser, and over the course of her life she managed to raise more than £40,000 for various charities including the Sick Children's Trust. Another of the charities she supported was the Royal British Legion, where she acted as the "poppy princess" in the run up to Remembrance Day. Margaret Wadsworth from the charity told us, "she always had a smile, however much pain she was in, whatever the situation."
She was ITV Border's regional Pride of Britain Regional Fundraiser winner in 2013.
In 2015 Jodie was awarded a British Citizen Award in recognition of her inspirational work. In the same year she met Sir Tom Jones, who told her she was "amazing". The meet and greet was organised by the Sick Children's Trust to thank Jodie for her her contribution to the charity.
Jodie also set up her own website, called Jodies Journey, to raise awareness of her condition.
Earlier this year, her twin sister Emma started a social media campaign that raised more than £6,000 in one month for Jigsaw, Cumbria's hospice for young people, where Jodie had been staying for respite care.
In 2015, Jodie's mother Maxine Farish told ITV Border that:
She has gone through so many major operations, along with a whole host of other ongoing complex issues that she has to deal with and live with daily. But Jodie doesn't let this hold her back whatsoever. When we were told that her illness was life limiting, the heartbreak was beyond words.
Jodie died in the children's hospice in Carlisle over the weekend, surrounded by her family.
A post on social media read: "Our brave and beautiful Princess sadly passed away in the hospice yesterday and we are absolutely heart broken ?
"Jodie was surrounded by her loving family and she was brave beyond words. May she now rest in peace.
"She was too precious for this world and gained her angel wings far too early.
"She will never be forgotten and will always be forever loved.
"Fly high Jodie darling. Always Just ‘Believe"