Elle Grace and her mother Becky Whitfield. (Image: PA)
Her plight got stars such as Simon Cowell, Hollywood's Chris Pratt and Dermot O'Leary to raise awareness of the disease.
In February 2017, after seven months waiting in vain for Vertex's Orkambi drug to be made available for free on "compassionate grounds", poorly Elle had a double lung transplant.
But infections following the operation in January last year meant the youngster from Nantwich, Cheshire, lost her fight for life.
Elle's mother, Becky Whitfield, says a fitting tribute to her public defiance of the condition would be for Vertex and Mr Hancock to agree an NHS deal for their life-saving drugs.
The single mother of two, 32, said: "Because she had been in and out of hospital, doctors offered her Orkambi on compassionate grounds but it took months to get the paperwork sorted.
"Before she got it we got the call about the transplant and she had that instead. But although they were a perfect match it destroyed the rest of her body.
"She had seizures which really scared her around Christmas 2017 and her body just finally gave up. Obviously Orkambi was not around when she was little but if it had, who knows what would have happened?
Elle was not diagnosed by
