A generous donation has given an Onerahi boy with a rare medical condition an out-of-the-ordinary trip to town.

Kassius Hepi, 4, is one of only two people in New Zealand - and one of about 300 worldwide - suffering from a genetic disorder called Pallister-Killian syndrome.

His family have been trying to get a wheelchair-friendly van to take the youngster around and thanks to enormous community fundraising, particularly by the Onerahi Lions Club, Kassius now has a flash new vehicle for getting around in.

The generosity of the community and fundraising efforts from Lions have astounded Kassius' family and the van means he will now be able to take longer trips with parents, Heremia and Julie Hepi, older sister Shalia and brothers Jayde and Rome.


Their first drive in the van was a trip to Whangarei to look at the shops while he also recently spent a week in Auckland with his sister.

"As soon as we got in there he started smiling," said Mrs Hepi.

The van is also able to fit Kassius' life-support equipment which includes a feeding and oxygen tube.

The need for a van was first brought to the attention of the Onerahi Lions Club in 2012 by Kassius's grandmother, Ivy Ashby, who works there as a caterer.

Onerahi Lions member, Doug Smith, helped organise "Kassius 500", a sponsored walk to raise money. A total of 2046 kilometres were walked and a $10,000 cheque was given to the family.

Further donations were made by other Lion Clubs and a $12,000 grant from the Northland District Health Board was given to the cause while Bethells Uniforms also provided sponsorship.

"It was just a magnificent effort by everyone involved," said Mr Smith.

The Hepi family was given a discounted Mercedes Benz Viano from Rod Milner Motors in Auckland at a handover ceremony on August 2.


"We didn't want any attention when this whole thing began. We're normally the ones that would go help someone else and so being on the other side is hard," Mrs Hepi said.

The Onerahi Lions Club is planning its next project; reading programmes at Onerahi Primary School.