In Alert Level 3 last year, Auckland parents Jerome Mika and Julia Wharewera-Mika lost their nine-year-old son, Josiah , to a rare form of epilepsy.
Within two weeks of being diagnosed with febrile infection-related epilepsy syndrome, or FIRES, Josiah died.
FIRES is so rare it affects one in a million children and only nine in Aotearoa. Potentially fatal, it is thought to be onset by a cold or flu, with children suffering recurring seizures within 24 hours to two weeks.
Out of their tragedy and heartbreak, the Mikas have created the Rise+Shine Josiah Mika Foundation to honour his life and help disadvantaged tamaraki and rangatahi access sport, arts and learning opportunities.
"There are still kids that are struggling. We could either be at home in a foetal position mourning our boy or we could celebrate by looking after other kids," Jerome said.
"Josiah was like that. He was very caring, he brought kids home … We’re honouring his memory through the foundation."
Julia said they had created a Givealittle page and are asking Kiwis to get behind it so they can improve the lives of tamariki and rangatahi.
"Josiah may have only had nine short years of life but he had so many opportunities to flourish and thrive. He was really active in sports, lots of art forms … He thrived in social settings, so he loved participating in rugby league, touch and tag. He just loved being around people and he loved bringing people on that journey with him …
"He was such a caring, beautiful young man. By having the foundation, it’s a way we can honour his legacy," she said.
"Rise and Shine has great meaning for us in many different ways. Our main focus is on empowering tamariki and rangitahi to rise above adversity, to exuberate resilience and to flourish and shine and to have the opportunity to be able to."
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