Mother of two kids with rare disorders wants Government help

A single mother of two children with rare disorders says for too long those conditions have been neglected.

She's part of a campaign that wants the Government to help the 300,000 people affected with rare diseases in New Zealand.

Kerryn Hailwood and her 10-year-old son Anthony have to be swiped into school every morning.

That's because this isn't just any school, it's a secure unit for Conductive Education at Naenae Primary.

The unit looks after children who suffer from rare disorders - including Anthony who has AUTS 2 syndrome.

"So he has a duplication on one of his genes, not much is known about it," his mother, Kerryn Hailwood said. 

Hailwood is a single mother of four and has a second child, 11-year-old Seth, who also has a rare disorder called Usher Syndrome Type 3.

"He is overtime going to lose his vision and his hearing," Hailwood said. 

Seth's also been diagnosed with ADHD and is on the autism spectrum.

He lives with Hailwood's mum because it's too difficult for the boys to live together.

He wasn't coping with all the changes and constant hospital admissions that came with Anthony," Hailwood said. 

Rare Disorders New Zealand launched a campaign at Parliament today to raise awareness for the 300-thousand New Zealanders living with a condition. 

It wants a National Rare Disorder Framework to improve access to diagnosis, treatment and care.

"6000 different variable types when you put them all together. It is a very large group, it's one in 17 people and more than who have diabetes in this country," said Rare Disorders CEO, Lisa Foster. 

For Anthony, every day is a big step forward. 

And his mum hopes he'll get more support to help manage his rare disorder.