2-year-old Amirah Najim-Phillips waves her right hand in response to her family, puckers her lips to blow bubbles and shows off her nail polish.
Despite all odds "miracle child" Amirah Najim-Phillips continues to fight for survival two days after the machine helping her breathe was turned off.
Today, the 2-year-old, who was left paralysed from the chest down and reliant on a breathing ventilator after a horrific crash a month ago, is being shifted from Auckland City Hospital's intensive care unit to the children's ward.
"I've been waiting and waiting for this day to come. I didn't know it would be this soon, my beautiful girl has been doing amazingly well," Amirah's mum Daelyn Phillips told the Herald today.
Amirah Najim-Phillips, 2, with her mother Daelyn Phillips and father Mohammad Najim. Photo / Supplied
Phillips said now she was able to sleep in the same room as her precious daughter and could start getting trained to look after Amirah without needing to visit the intensive care unit again.
"She truly is a miracle to have overcome the odds and keep on striving."
The joyful news comes after the family on Wednesday made the heart-breakingly difficult decision to turn off Amirah's ventilator.
They were told the chances of her being able to breathe properly on her own were slim.
"The doctors know that she can breathe but it's a matter of time and for how long - as the main breathing muscles are gone as the nerves were affected in the crash," Phillips told the Herald yesterday.
Phillips today said her daughter was trying hard but her breathing pattern still wasn't normal and required a lot of monitoring.
Two-year-old Amirah Najim-Phillips in Starship ICU, holding hands with her elder sister Zahara. Photo / Supplied
"She's slowly starting to get her coughs back but still not strong enough to bring up spit so she regularly gets suction."
She said the main concern was Amirah's lungs collapsing but so far she had been doing amazingly.
"She knows we are here and we can feel that she knows that and wants to be here with us as well."
Horrific crash
Wellington couple Daelyn Phillips and Mohammed Najim were travelling home from Auckland with their two daughters on June 13 when they were involved in a horrific accident on State Highway 1 near Waiouru.
An oncoming vehicle is believed to have crossed the centre line and smashed into the family's southbound car.
The toddler was one of seven people injured in the two-car collision, which killed a baby travelling in the other vehicle.
Amirah broke her spinal cord in several places, meaning she is paralysed from the chest down and can only move her right arm. She also received various broken bones.
She is in a halo brace to protect her spine and neck.
"She recognises all her family members, she can talk and move her right arm. She has normal facial expressions and she has all normal emotions," she said.
The family said they'd earlier found the hospital reluctant to keep her on long-term breathing support - but if it came down to it, they'd be willing to fight for her life.
'Decisions that are unimaginable to most people'
The Auckland District Health Board said for ethical and privacy reasons it was unable to comment on clinical details of the specifics of care for any individual patient.
As general comment, chief medical officer Dr Margaret Wilsher said, "Starship's paediatric intensive care unit [PICU] cares for children with critical and often life-threatening illnesses.
"Many have complex conditions and needs, and families face challenging situations and decisions that are unimaginable to most people.
"As clinicians, our role is to support families to make decisions together with our healthcare team about the care of their loved ones. This is a thoughtful, considered process that takes place over time.
"It can involve difficult and distressing conversations but it is very important our patients and their families have all the information they need to make informed decisions."
However, CCS Disability Action spokeswoman Melanie Gamble said no parent should be put in the position of having to fight for the basic right of their child to live on the basis of a disability that requires mechanical ventilation.
"Disabled children have as much of a right to the medical care and supports required to enable them to live a full life as non-disabled children do," she said.
"No doctor can predict accurately how long someone can live on a mechanical ventilator, nor how good their life is going to be.
"Worldwide, many people are supported by long-term mechanical ventilation to live meaningful lives as part of their communities."
