Erin Griffin, 14, and her family emigrated from Ayrshire to Adelaide in Australia when she was aged six. She was diagnosed with diffuse intrinsic pontine glioma (DIPG), an incurable brain cancer, in 2012.
Because she was living in Australia, Erin was able to take part in a ground-breaking gene therapy trial there which modified her bone marrow cells allowing her to withstand increased chemotherapy.
But last night her family announced the teenager had passed away at the Children’s Hospital in Adelaide with her parents, brother and grandmother by her side.
She died less than an hour after Childhood Cancer Awareness Month began in Australia.
Her mother Amanda Griffin had said previously the treatment her daughter got would not have been available if they had remained in Scotland.
“We’re all very sad to lose this special girl,” Erin’s specialist oncologist Dr Geoff McCowage said.
Dr McCowage, who runs a gene therapy trial at the Children’s Hospital, said Erin had made history. “She was only the second child in the world to take part in the trial,” he said.
“Throughout her ordeal, she stayed courageous, she took two trips to the US, one to Scotland, and she was active on the internet telling the story of what she was going through and offering support to others going through the same thing.
“Even after all of that, Erin has thought to make a tremendously valuable gift, so we can get insights into how to cure this terrible tumour.”
Despite her condition, Erin had campaigned to improve childhood cancer research, starting a petition last year calling for the Australian senate to make it a national priority.
She also met a number of US congressmen and women and delivered a speech on childhood cancer awareness at Curefest in Washington DC, where the cancer “community” meet top paediatric oncologists and US government leaders every year.
In 2013, Erin received a Children’s Week award for her advocacy work in raising childhood cancer awareness.
DIPG is a type of tumour found in the pons, part of the brain stem on the lower back of the brain, near the top of the spinal cord.
It primarily affects children aged between five and seven and makes up 10 to 15 per cent of all brain tumours in youngsters.
As yet, there has been very little progress in improving treatments and fewer than 10 per cent of children with DIPG survive two years from diagnosis.
The founder of the Australian based Kid’s Cancer Project, Col Reynolds – which helped fund Erin’s gene therapy – paid tribute to the teenager, saying she had lived without fear.
“I can’t believe she’s gone – she was shy, beautiful and an inspiration, so determined and full of optimism for the future,” he said.