A heartbroken Porirua family will go ahead with a fundraiser today, despite the death of the baby at the centre of the appeal.
Harlem Wotton was born in Sydney in October, five weeks premature, to Kelly Wilderink and Jamie Wotton.
The baby had a heart defect and bone marrow failure, and spent all his short life in an incubator at Westmead Children's Hospital in Sydney.
He died yesterday morning.
Harlem could not produce white blood cells, red blood cells or platelets.
Among the operations he had was one to mend a cardiovascular malformation when he was three weeks old, and a bone marrow transplant last month, as well as chemotherapy.
Family friend and personal trainer Matt Nolan organised Hope For Harlem, a two-hour bootcamp-style training session, with the support of Hurricanes players and personal trainers to raise funds to allow the family to stay by Harlem's bedside.
Mr Nolan said he felt it was important to go ahead with the fundraiser because the family still needed to know people were behind them, whether that support was shown in love or money.
"The money was raised to support Kelly's journey with her son.
"She's basically given up everything to look after her son, so we need to show some respect and make sure we do what we can to help her, regardless of what happened."
Ms Wilderink's mother, Pepsi Wilderink, said her daughter had told her she would like to see any money raised today go towards charities to support other children like Harlem.
Earlier this week, family members wrote on the Hope for Harlem Facebook page:
"So fragile you need a team of nurses around you every time they need to do the slightest movement . . .
"The pain we feel watching you is like a numbness you never want to feel. It's an ache that never goes away.
"You are always in our heart and our mind . . . We love you to the moon and back.
"And will never leave your side for as long as you keep fighting."
The fundraiser will be held on the Paremata School field between 9am and 11am today, $20 entry fee.
- © Fairfax NZ News
Would you support your local council paying the 'living wage'?Related story: Council's living wage blowout