It was a plight which touched the hearts of thousands, and inspired countless acts of generosity and support across the country.
As 17-month-old Poppy-Mai Barnard battled an incurable condition, her family chronicled her final months on an online journal which amassed almost 39,000 followers, while a series of high profile fundraising events saw thousands of pounds raised. She even came second to Boaty McBoatface in a national contest for the naming of a new polar research vessel.
Now, following her death earlier this week, her father Andy has spoken of his incredible pride in his daughter, and how overwhelmed he feels by the public's reaction to her story.
Mr Barnard, 31, said: 'I'm the proudest dad in the world right now. We were overwhelmed by it all. Poppy-Mai has done more in her 17 months of life than a lot of people do in their whole lives.
'She has shown me a new direction in my life and I intent to carry it on.
'I think the fund-raising will carry on even more. Poppy-Mai was never going to benefit from it – she is the unfortunate little one who is going to spread the word for all the other little children who suffer.'
Poppy-Mai was diagnosed with a progressive malignant rhabdoid tumour in March and was given weeks to live. She died on Tuesday afternoon. Since the diagnosis, Mr Barnard and his wife ,Sammi, from Thetford, have written about her story on the Facebook page, The Journal of Poppy-Mai.
Mr Barnard said the family, including Poppy-Mai's brothers Rylee, six, and Jenson-Jay, four, had time to prepare and 'make more memories' before her death, including visits to Center Parcs in Elveden and BeWILDerwood, near Horning.
'We're a very outdoors family and we get out as much as we can. Poppy-Mai wasn't happy in the house,' said Mr Barnard.
Following news of Poppy-Mai's death, donations to the family's Go Fund Me page soared. They hope to raise £100,000 to build a campsite for sick children, which they plan to name Poppy's Field. So far, the page's total stands at nearly £50,000.
Mr Barnard intends to publish a book about the family's experiences, to help other parents who find themselves facing the same devastating prognosis.
He said: 'It's the only way to get through this. I could be selfish and just let someone else suffer, or I could do something to help them. It may help other people to see what we missed.'
Poppy-Mai was in contention to be the namesake of a new polar research vessel, with her name coming second only to Boaty McBoatface in a poll commissioned by the Natural Environment Research Council (NERC).
However it was announced today that the boat will be named RRS Sir David Attenborough, after the renowned naturalist and broadcaster.
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