At the age of 10, Charles Tareha was diagnosed with a cancer so rare only 185 people worldwide had shared the same disease.
Doctors started talking palliative care almost immediately.
And while the courageous youngster, also known as Kayah, was unable to show the world he could survive small blue-cell cancer like he once said he would, Charles managed to squeeze in another three-and-a-half years of living before succumbing to the disease late last week.
At a funeral to honour the 13-year-old on Monday, his papa Don said Charles would have hated the adult tears on display.
"Tears for an inevitability you came to terms with long ago would have embarrassed you," he said. "But we cannot say goodbye without tears, so close your eyes and ears, Kayah, and let us have our grief.
"We have seen an outpouring of aroha for you in the Kawerau community and on social media. The songs, the stories, the words all speak to us about who you were."
Speakers told the tale of a brave and courageous young man who fought a good fight and always smiled through the pain. Charles chose life and did not let his cancer define who he was, despite often being sick. He would pull on his pink beanie, grab his scooter and head to the skatepark with his mates.
"Even on the morning of his death, he got up, ran the length of the hallway then did a Superman dive onto his bed," one speaker said.
Those gathered heard how Charles, with constant support from parents Maia and Kipa, loved school, his mates and his church group.
Pastor Matai Bennett, from the Community Church of Kawerau, described Charles as a kid who had an impact. "He was able to bring joy all around the place," Mr Bennett said.
He also heaped praise on Charles' family, saying their last few years had been dedicated to their son and brother.
"There will be a huge void, so, friends and whanau, we need to help fill that void."
Waiata and haka were performed around his coffin before a private cremation