Hamilton family's heartbreaking plea: Funding desperately needed for children's life-saving medication

A Hamilton couple are calling for more funding for crucial medication for their children, who are battling a rare genetic condition.

Leisha and Patrick Lockley have had to give up their jobs to care for their high-needs children - and are now paying up to $5000 a month for medication for their oldest, who has an aggressive tumour in his thigh.

The medication they really want - that their son should have - is $65,000 a month.

They spoke exclusively to National Correspondent Amanda Gillies. 

The giggles reverberate around the playground.

Five-year-old Makiah Lockley is doubled over, desperately trying to bat off his older brother's tickling. He can't stop giggling, it's infectious.

From the outside, they look like your typical happy family. Six kids playing together in the yard, laughing, teasing, smiling.

But five of the six have serious health issues - from brain tumours to severe autism to an intellectual disability.

"The toll on us is our mental health, our physical health, our own wellbeing. It's huge," said their mother Leisha Lockley, who now battles ME and endometriosis 

Her four oldest children have neurofibromatosis, inherited from their dad Patrick.

It's a group of three conditions in which tumours grow in the nervous system. They can turn cancerous. 

"There is no remission from this, there is no end day, no heal like a broken bone, this is forever," Leisha said.

No one in the family knew about the condition until Leisha was pregnant with baby number four, Brae.

It was discovered when baby number three, Aayla, was diagnosed with brain tumours, she was just three years old.

"She has other tumours growing now, she can only feel half of her skull. Her outlook on life is up in the air. We say a ticking timebomb."

Leisha then looks to her husband, Patrick, who gently rubs her shoulder.

"We are just living day to day not knowing what tomorrow brings for any of our children," he said.

The couple used IVF for baby number five - to avoid passing on the condition - but Eli was born with severe autism.

But this loving family has never complained, never asked for help. Until now.

"It's the only drug available for a rare condition. Please fund it. Please fund it," Leisha pleaded.

She's referring to a drug for her oldest child, 23-year-old Paetyn, who has tumours in his spine and a large aggressive cancerous tumour in his thigh. He was diagnosed with the latter just two weeks after starting his dream engineering job.

The medication to shrink the thigh tumour, trametinib, costs up to $5000 a month - and that's the cheap option. The medication they really want, the most successful one - selumetib - is $65,000 a month. They can't afford either. They're not funded.

So I asked the Lockleys what would happen if Paetyn didn't have the treatment. Their answer was quick and heartbreaking.

"Complete loss of leg," said Leisha. "And of course there's concern of complete loss of life."

At that moment, Patrick looks at his wife, a mixture of sadness and anger in his eyes.

"It's bull crap that they can't fund it for families in need," he said. "It doesn't matter if you are poor or rich, every kid deserves a chance to live."

Associate Health Minister David Seymour, who looks after Pharmac, encouraged the family to apply - through their specialist - for the Named Patient Access Scheme.

"I would encourage them to do that and if they do then Pharmac will do their best to deliver what they need," Seymour said.

It's not guaranteed. But it is something.

Both parents have had to give up their jobs to take care of their children - for so long, they've done it alone. But they have no regrets.

"Definitely not, it's made us who we are today, made us stronger, shown us how important life is," said Patrick.

A friend has set up a Givealittle page.

And they are speaking out now - not just to help their children but every sick child in New Zealand.