James and Elizabeth Dunne are eager to return to New Zealand with baby Harrison. Photo / Provided
There is a growing hope that a New Zealand baby born in Europe with a life-threatening disease can come home in time for Christmas to meet with her extended family.
New Zealand mother Elizabeth Dunne gave birth to her son Harrison in Ireland in September after she traveled there with her husband James to seek medical help after suffering a previous miscarriage.
But Harrison came into a world “not breathing or moving”.
She was diagnosed with myotubular myopathy, a genetic condition that makes her muscles weak and she relies on a ventilator to help her breathe.
Informed that the healthiest option for Harrison and his family was to return to New Zealand, the Dunnes were shocked to learn that they would need to charter a specialist medical plane for € 250,000 – nearly NZ $ 430,000.
However, the fee was lowered to € 70,000, less than NZ $ 100,000, in the last day or two after doctors concluded that specialist aircraft were not required for Harrison to fly home.
A Gofundme page now set up to help the family raise money and go home, James’s father told Irish radio station Beat.
“As a parent, you want what’s best for your children in normal situations, but put that in a hyper-nightmare situation and then add to the world pandemic, and give 14,000 kilometers between you and the place you want to be,” he said.
The nightmare diagnosis for baby Harrison came after the Dunnes family suffered multiple heartbreaks trying to give birth.
The young family, who have taken over the Palmerston North Aqaba cafe from Elizabeth’s parents, have had four miscarriages.
Elizabeth also had a molar pregnancy, a complication in which the tissue around a fertilized egg develops abnormally to form a mass that needs to be removed.
They then traveled to Ireland, where James’s parents lived, to meet with doctors, who had helped women with a history of miscarriage to have a successful birth.
There was no indication that anything was wrong with the pregnancy until baby Harrison was born “drooping” and unable to move.
Mum Elizabeth told Irish station Beat that there had been developments at Harrison since she was born and that they were “holding on to hope.”
However, there is no cure for her condition and doctors have told them not to expect her to live long.
“There is no drug, clinical trial, surgery or drug that will fix Harrison. All we can control is the life we provide for him,” the family said on their Gofundme website.
Elizabeth said her family was “trying to live the best possible life” in every precious moment spent together.
Because of this they have had “a lot of discussion with doctors about quality of life”, he said.
This ultimately led to the belief that returning to New Zealand was important so that they could be near their support network and give Harrison the “happiest and most fulfilling life”.
But there are also medical reasons.
Specialists told the family it was important to protect Harrison from illness for the next two years because even the common cold can be difficult for him to recover from.
“New Zealand is currently moving towards more favorable weather for Harrison and giving him the best possible start before the next cold and flu season,” the couple said.
“For this reason we are eager to be home before Christmas, when summer really starts. All we have now is time with him.”