Even as little Iris Roxo Zubok was slipping away, there were moments of comfort for the parents who fought so hard to give her a chance at life.

In the three weeks Iris spent at home - before succumbing aged 4 months to ailments mostly connected to a rare gene mutation syndrome, her mum and dad watched the bond form between their two precious girls.

“The bond that both sisters had, it was so strong”, said father Nicolas Zubok of baby Iris and Eva, 2.

“Eva couldn’t understand what was going on, but they were so connected. It was something really magical.

Sisters Eva Roxo Zubok, then aged 2, and Iris Roxo Zubok, then aged 2 months, pictured before Iris' death aged 4 months in August last year from complications relating to Kabuki Syndrome.

“Now every night when we go to bed we say, ‘Goodnight Iris’. And we told Eva her sister became a star, so if it’s not cloudy outside she wants to see her sister.”

Zubok and his wife Michele Roxo are determined their baby girl’s legacy will go beyond those closest to her, and help other families facing child illness or loss, especially related to rare conditions. He encouraged anyone wanting support to message him on Facebook.

“We’re just here to help other families now, and at the same time we keep her memory alive”, Roxo said.

“Because we think she didn’t come into this world for nothing.”

Eva, who turns 3 next month, has helped them get through after the death last August of their younger daughter Iris, 4 months, says Nicolas Zubok, pictured with wife Michele Roxo. Photo / Dean Purcell

Iris’ story began a year and a day before her death, when Roxo took a pharmacy pregnancy test just before friends arrived for her 40th birthday celebration.

Surprise!

But while it was unexpected, the couple were looking forward to turning their family of three into four, and the first months of pregnancy passed without incident.

It was at the 20-week scan they heard the news every expectant parent dreads, Zubok said.

“The lady was doing the scan and she said, ‘Oh, something’s not right’ … she had cleft lips, but the main thing was her heart - it was not the [right] shape.

“It was really scary.”

Their unborn daughter would later be diagnosed with double outlet right ventricle, a rare congenital heart defect where the heart’s two main arteries both connect to the right ventricle - a problem because the right ventricle carries oxygen-poor blood, which then gets circulated in the body.

She also had pulmonary stenosis, a heart valve disease that narrows the pulmonary valve controlling blood flow from the heart’s right ventricle into the pulmonary artery, to carry blood to the lungs.

“While she was inside Michele’s body, there was no problem because the hard work is done by Mummy, but as soon as she was born, [they said] it could be a big problem.”

A chromosomal condition was suspected, but the three main ones - Down, Edwards and Patau - were ruled out after an amniocentesis test at 32 weeks.

Another scan three weeks later revealed a kidney issue, but doctors told the couple further investigation would need to wait until Iris was born.

A cast of baby Iris' feet and hands is a precious memento for parents Nicolas Zubok and Michele Roxo, and sister Eva, after the 4-month-old succumbed to multiple ailments related to Kabuki Syndrome in August. Photo / Dean Purcell

They never considered ending the pregnancy, Zubok said.

“We said, ‘Whatever she has, we’ll go through till the end and we’ll try everything that we can to keep her alive and give her the best life that she can have.”

That life began on March 30 last year, when Iris arrived a week early weighing 3.02kg (6lb 10oz) and was whisked into Auckland City Hospital’s newborn intensive care unit.

More ailments were discovered, including her anus being too close to her vagina, problems with urination, congenital hip dislocation and a spinal anomaly.

One eye hadn’t developed and the other was compromised, Zubok said.

“So, in the first week she was born, we knew that she probably would be blind for the rest of her life.”

With Iris’ heart the most pressing concern, a “balloon” procedure was used to expand an artery and improve her oxygen levels.

More procedures followed, including putting in a catheter and a feeding tube, in the hope she could have heart surgery once she gained weight.

“But there were so many things going on in her body that [the doctors] always said, ‘If I try to fix one thing, probably the other thing will be worse. And then when you try to fix that worse thing, something else will happen’.”

Sisters Eva and Iris Roxo Zubok formed a strong bond during three weeks spent together at home before Iris' death aged 4 months from complications relating to Kabuki Syndrome.

Despite the challenges, and the pressure of managing Iris’ health battles alongside Eva’s care and Zubok’s need to return to work, their baby girl was growing.

At 2 months, she was discharged from hospital, allowing the family to have three precious weeks together at home in Te Atatū Peninsula.

And while it was lovely seeing their two daughters bond, the journey was far from smooth.

“Feeding became a problem because she was crying all the time … we could feel that she was in pain, and every time she was crying her oxygen levels dropped, and it was not good for her heart.”

After two visits to Starship’s emergency room, Iris was readmitted.

Nicolas Zubok and wife Michele Roxo are determined their daughter Iris' death won't be in vain. Photo / Dean Purcell

She’d never leave again: the next month saw baby Iris’ health deteriorate, including a terrifying cardiac arrest, which may have left her with some brain damage, Zubok said.

“She was resuscitated for 16 minutes ...

16 minutes with no life at all.”

It was during this month that Iris was diagnosed with Kabuki Syndrome, a rare congenital disorder that can result in distinctive facial features, mild to moderate mental impairment, growth problems and issues with many parts of the body, including the heart, intestines, kidneys and skeleton.

The syndrome occurs in about one in 32,000 births internationally, and they could only find two other current cases in New Zealand, Zubok said.

The syndrome explained Iris’ myriad health issues, including the kidney blockage that proved the final challenge when dialysis stopped working, he said.

“In the end, she had a big clot … from the heart to the guts, I think the veins were just blocked.”

By August 4 - her mother’s birthday - the family were preparing for the end, which came the following day.

“She was in our arms for 13 hours, and then she passed.”

The death of their baby daughter Iris has given them perspective, and a desire to help others going through child illness or loss, says Nicolas Zubok, pictured with wife Michele Roxo and their daughter Eva Roxo Zubok. Photo / Dean Purcell

And while life carried on in the months since - the now almost 3-year-old at home ensured that - change was inevitable, Zubok said.

“I can’t say I’m the same person I was. It was a big lesson we learned - that life can go anytime. Keep your family close, and just give importance to what is really important.”

This new perspective, and the desire to support others going through child illness or loss, were Iris’ final gifts to them, he said.

The ongoing comfort of both was immense.

“We have this conversation very often, me and my wife, because we don’t want to leave Iris behind. We think she came to this world for a purpose.”

Cherie Howie is an Auckland-based reporter who joined the Herald in 2011. She has been a journalist for more than 20 years and specialises in general news and features.