New Zealand mum Elizabeth Dunne gave birth to son Harrison in Ireland in September after she travelled there with husband James to seek medical help after suffering previous miscarriages.
But Harrison came into the world "not breathing or moving".
He was diagnosed with myotubular myopathy, a genetic condition that left his muscles weak and means he relies on a ventilator to help him breathe.
Told that the healthiest option for Harrison and his family would be to travel home to New Zealand, the Dunnes were shocked to initially learn they would need to hire a specialist medical plane at a cost of €250,000 - nearly NZ$430,000.
However, that cost was lowered to €70,000, just short of NZ$100,000, in the past day or two after doctors concluded a specialist plane wouldn't be needed for Harrison to fly home.
A Gofundme page has now been set up to help the family raise the cash and get home, father James told Irish radio station Beat.
"As parents you want the best for your kids in a normal situation, but put that into a hyper-nightmare situation and then add a world pandemic, and put 14,000 kilometres between you and where you want to be," he said.
The young family, who had taken over Palmerston North cafe Aqaba from Elizabeth's parents, had been through four miscarriages.
Elizabeth also endured a molar pregnancy, a complication where tissues around a fertilised egg develop abnormally to form a mass that needs to be removed.
They subsequently travelled to Ireland, where James' parents lived, to meet with doctors, who had helped women with histories of miscarriages to successfully give birth.
There was no indication anything was wrong with the pregnancy until baby Harrison was born "floppy" and unable to move.
Mum Elizabeth told Irish station Beat there had been progression in Harrison since he was born and that they were "holding onto hope".
However, there was no cure for his condition and doctors had told them not to expect he would lead a long life.
"There is no cure, clinical trial, surgery, or drug that will fix Harrison. What we can control is what life we provide for him," the family said on their Gofundme page.
Elizabeth said her family was "trying to live" the best they could in each precious moment spent together.
Because of that they had been having "a lot of conversations with doctors about quality of life", she said.
That ultimately led to the belief that getting home to New Zealand was important so they could be near their support network and provide Harrison with the "happiest and most fulfilled life" possible.
But there was also a medical reason.
Specialists told the family it was important to protect Harrison's from illness over the next two years because even the common cold could be hard for him to recover from.
"New Zealand is currently moving into weather that is more favourable for Harrison and gives him the best start possible before the next cold and flu season," the couple said.
"For this reason we'd love to get home before Christmas, when the summer truly begins. All we have now is time with him."
