A Christchurch family is being forced to leave New Zealand because the parents can't get residency for their four-year-old daughter.
Ruby O'Connor was born in New Zealand. Her mum Kerry Hayes, dad Bryan O'Connor, and baby brother Leon can all get residency, but she can't because she has a disability and her medical bills run into the tens of thousands of dollars a year.
Her parents say their immigration experience has been demoralising and disgraceful, and want changes to the policy.
"She's just not wanted, and it's pretty much massive discrimination against someone with a disability even though she was born here," Hayes tells Newshub.
"You just feel like you're not good enough, you know."
The family's heartbreaking story began with such promise. O'Connor is a builder who moved to New Zealand at the end of 2013 to help with the rebuild in Christchurch after the earthquakes.
Hayes, a beauty therapist, arrived a month or so later, attracted to the lifestyle. Both are Irish and had working visas.
They met in Christchurch, fell in love, and in 2017 welcomed Ruby into their world.
"We knew there was something wrong immediately. I knew there was something wrong immediately," Hayes says.
When Ruby was two, she started having seizures and soon after she was diagnosed with TBCK - a rare neuro-genetic syndrome. She's the only person in New Zealand to have it and one of just 17 worldwide.
"It affects every aspect of her life. She can't walk, talk, she has seizures, she's peg-fed, so she can't have anything orally," Hayes says.
She's also visually impaired, has osteoporosis, and is immune-compromised. She's already been hospitalised, in ICU, with serious bouts of pneumonia.
"We nearly lost her on two occasions, it was quite close. They had no hope for her but she kept fighting," Hayes says.
As Ruby fought for her life, her parents fought hard to keep her in the country, in the only home she's known.
The family wanted residency since New Zealand has been their home for eight years, but they say they were told only mum, dad, and their healthy baby son Leon could stay. Ruby couldn't because of her disability and medical needs. Even though she was born here, she's included in her parent's resident visa application as a dependent child.
The family spent thousands of dollars and thousands of hours to secure her residency - applications, lawyers, letters - but to no avail.
"We just get this block every time and she's constantly refused because of her medical criteria," Hayes says.
Green MP Ricardo Menéndez March says this is a disgrace and he wants the immigration disability policy changed.
"It's deeply painful to see our immigration policy once again strip migrants of their human rights by design," he says.
"I think it is time that the minister intervenes, stops these deportations, and scraps the acceptable standards of health policy so that disabled people are no longer discriminated against."
Newshub requested an interview with Immigration Minister Kris Faafoi but this was declined. Newshub then approached Prime Minister Jacinda Ardern.
"When you individualise and talk about individual stories, those stories are hard and very difficult. But you have to understand why we have to give consideration to that because we do have a universal public health system," she says.
"Once you are here on long-term visas, you receive that free care, so we need to make sure we can continue to provide that free care - well - to everyone."
Ruby's medical costs run into the tens of thousands a year, but her parents say they pay taxes and desperately want the immigration policy changed.
"She deserves to be treated like any other normal four-year-old, she still has needs and wants. It's just inhumane to be pushed out like that," Hayes says.
"After all the hard work we put in, paying tax and giving back to the community. Ruby was born here at the end of the day. It's not fair on her and not fair on us. She's being deported, basically," O'Connor adds.
That means on March 15, the whole family will bid farewell to New Zealand, their home, their friends, and their medical community for good. They'll start all over again, a world away, back in Ireland where they'll give Ruby the treatment she needs.
