Brave Transplant Toddler Loses Fight
Aria MacDonald was born with a rare condition that had no cure, and her parents were told that nothing could be done to save their baby.
But Aria clung on with smiles that had hundreds of people hoping she might pull through, before she died in hospital this week.
"Things are still very fresh and raw for us and we have not begun to plan the days that will follow," said Aria's mother, Anita MacDonald.
"We will long for the day when we see her again."
Aria had total Hirschsprung's disease, which meant her entire digestive tract failed to function.
Her devastated parents nevertheless took their newborn baby home from hospital with faint hopes of a medical intervention.
Aria could never eat any food, instead taking nutrients through a needle in her shoulder.
Anita and Hamish MacDonald cared for their daughter at home for more than two years, taking every precaution to avoid infections through her intravenous line.
But at the end of 2008 the regime began to take a toll on Aria's liver.
Her only hope of long-term survival was to replace four organs - her liver, small intestine, kidneys and pancreas - in an operation that could be performed only overseas.
It cost more than US$1 million ($1.2 million) to get the procedure in the United States.
The MacDonalds chronicled Aria's plight online, partly as a way of fundraising.
Her first operation came in February last year in Omaha, Nebraska, when she received four organs from a single child donor.
But her body rejected the small intestine, and Mr and Mrs MacDonald had to look for another set of transplants and more funding.
Mrs MacDonald said these were particularly dark days.
Aria's second operation was in May 2010 - but still her hard luck continued, as she dealt with infections and a possible post-transplant cancer, for which she received chemotherapy.
Late last week, Mrs MacDonald wrote that Aria was going through another dreadful period as her health fluctuated.
On Sunday, she was put on an oscillator and a dialysis machine.
Mrs MacDonald wrote: "We aren't done fighting! Aria isn't done fighting although the battle is getting harder for her."
The 5-year-old died the next day.
"She passed peacefully in our arms," Mrs MacDonald said, remembering how Aria had touched many lives during her own short life.
"Her five years of life has been one of hardships, struggles, pain, suffering and sorrow; yet we know that she has gone to a place where she need not be bothered by these things any longer."
Almost 200 messages of condolence had been left on the MacDonalds' blog last night.
By Michael Dickinson - New Zealand Herald