Having more than 50 blood transfusions in your first nine weeks of life is a rough way to enter the world.
But that was reality for Ethan-Lee Evan's who was born with a rare blood disease called Neonatal Alloimmune Thrombocytopenia (NAIT).
The disease occurs when the mother's platelets, a type of cell that clots bleeds, are incompatible with her foetus.
Ethan-Lee's mother Vanessa Evans had no idea something was wrong until he was born at Waitakere Hospital.
"When he came out he was really quiet and he was going white and stopped responding," she says.
"They whisked him away for tests for a few hours and they found that his platelet count was very low but the doctors couldn't explain why. The doctors thought he wasn't going to make it."
Ethan-Lee spent nine weeks travelling between Auckland and Starship hospitals.
Throughout the ordeal, Ethan-Lee had to endure blood transfusions, blood infections, anaemia and countless tests.
He's now 6 years old and is still dubbed the "miracle baby" by his mum and staff.
Since then the Titirangi family has been involved with naitbabies.org, a website sharing stories of other families who have dealt with NAIT.
The organisation's mascot is a teddy bear named Nait who travels around the world to spend time and help cheer up kids who suffer from NAIT.
Nait is now on his first trip to New Zealand and staying with Ethan-Lee at the moment.
"My class thought it was really cool and asked a lot of questions," Ethan-Lee says. "It is so fun having Nait here."
Nait will soon go on to meet four other NAIT kids throughout the country.
There are no ways to determine if a baby will be born with NAIT, however tests on the mother and father's blood can be done to see if they're compatible.
"I think New Zealand is a long way off doing any screening for the disease because there appears to be only a handful of cases in the country," Mrs Evans says.
Mrs Evans and her family are still grateful to those who have helped Ethan-Lee survive and thrive.
Visit naitbabies.org for more information.
- © Fairfax NZ News
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