The Mika Family in South Auckland have set up a foundation to help children in need in honour of their beloved son Josiah, who died from a rare form of epilepsy in 2020. Soana Aholelei sat down with parents Jerome and Julie for this story.
It’s every parent’s worst nightmare, losing a child.
This was the heart-breaking reality Faamoetauloa Jerome Mika and his wife Dr Julie Wharewera-Mika went through.
“As a parent, you love your children, you nurture your children and you do everything to protect them, so then when you’re in a situation where you can’t do anything it’s just… you feel so helpless and it’s very overwhelming.” Julie says.
In May 2020 their son Josiah complained of mild cold symptoms. After a visit to the doctor and swab tests, he was prescribed Pamol and antibiotics.
“The next day he woke up in the morning feeling fine. He was outside playing, the kids were laughing and having lots of fun outside, and then by midday he was feeling lethargic again, and by 3 o’clock that was when he had his first seizure,” Julie says.
After extensive monitoring for four days in Starship Hospital, the doctors diagnosed Josiah with FIRES, a catastrophic epileptic syndrome that strikes previously healthy children aged 3-15 years.
Julie recalls: “I almost passed out just at the prognosis and also given that it was a rare condition; FIRES – Febrile infection-related epilepsy – is one of those conditions, so they talk about it happening to one in a million children, and in New Zealand, paediatric neurologists have told us there’s only been nine cases.”
The doctors tried everything to help, but two weeks later, surrounded by his aiga, 9-year-old Josiah Mika lost his short battle with FIRES.
A year on, Jerome accepts that they did all they could to save him. Together with Julie and Josiah’s brothers, Jerome Jnr, Jovan and Jayden, life carries on. But they’re still coming to terms with his passing.
Jerome says: “It’s one of the things we kept asking. There’s so many questions and not enough answers… But at the same time we just had the best care for him at that time.
“We all process it very differently; JJ’s just really determined with his med school…”
Julie says Jovan is more reserved. “He had some good support from his school. He was quite keen to get back into the routine of things as well.”
“Jayden, well… he’s just 100 miles an hour,” Jerome chuckles.
Grateful for the support received from family and friends, Jerome and Julie found strength to form the foundation in Josiah’s honour.
“There’s many reasons for why we kind of landed with the ‘Rise and Shine’ concept,” Julie says.
“Firstly, whenever the children wake up, I’d always open the curtains and say, ‘Rise and shine, time to get out of bed’, and that seemed like a really warm way to bring them about into the morning,” she says.
The Rise & Shine Josiah Mika foundation is aimed at giving children a helping hand.
“A kind of deeper focus for the foundation is around empowering young people and children to rise above adversity, to exuberate resilience and to flourish and shine, and we want to create opportunities for all tamaraki in Aotearoa to have that opportunity,” Julie says.
At home the family have planted a garden dedicated to Josiah. The Mikas say the foundation is a reflection of the kind of person young Josiah was.
“He was quite a big kid, but he loved to play touch, he loved to play tag, he loved rugby league. He always gave everything 100 percent — a big personality but also a very caring person in the team,” Jerome says.
“We might not have him here, but at least there are other kids that… many other Josiahs who want to live to their potential. So the foundation will hopefully be a vehicle to help those kids to find ways to rise and shine.”
By Soana Aholelei
