Toddler with cerebral palsy who was told she would never walk is defying the odds

When Mackenzie McNeill went into labour with her first and only child in the winter of 2021, she never imagined the delivery would be so traumatic and frightening.   

Her daughter Emersyn, known as Emmy, was born at full-term.   

But the birth McNeill dreamed of quickly turned into her worst nightmare when her baby wasn't breathing and needed 16 minutes of CPR.   

"You think you will be handed your baby in your arms and that's taken away from you," McNeill said. 

"Emersyn ended up with a brain injury at birth and it was from a long period of time with needing CPR and struggling to breathe on her own," her father Jared Hardie told Newshub.   

Her brain damage is known as hypoxic ischaemic encephalopathy.  

A video of Emmy standing up for the first time went viral on social media.
A video of Emmy standing up for the first time went viral on social media. Photo credit: Instagram @encouraging_emersyn

Baby Emmy spent a month in hospital in NICU on breathing support. Her family say an MRI scan confirmed her brain was damaged from lack of oxygen in the basal ganglia area.   

She was then diagnosed with cerebral palsy.   

Medical professionals told Emmy's family she would likely never walk, talk, eat or even move.   

"She is a fighter because she's really not supposed to be here. She had such a long period of CPR, but she came back and she's here and she's doing everything that she's not supposed to be able to do," McNeill said.   

Emmy is now two-and-a-half years old and has made remarkable progress.   

A recent Instagram video of Emmy standing up by herself for the first time has been viewed more than 12 million times.   

However, the incredible moment didn't happen by chance.   

McNeill had been on social media and saw videos of another young child with cerebral palsy who seemed to be meeting milestones.   

McNeill realised this child was receiving intensive therapy at a centre on the Gold Coast. The therapists there work with children with disabilities for a programme three hours a day for three weeks.   

"I searched for something like this in New Zealand and there was nothing like it," she told Newshub.   

McNeill said she wasn't sure how she would fund the programme as it costs approximately $8000 to $10,000 for three hours every day, for three weeks.   

But family stepped up and were able to help fund Emmy's first visit to the centre, which proved to be a success for the toddler.   

"The first time she developed control of her head and was more cognitively aware and there was a spark in her.   

"I got told by a physio in New Zealand that she would never be able to use her hands to play with her dolls. We came home and she was playing with dolls," McNeill said. 

"The ability to hold up her head really allowed the rest of her body to sort of do what she wanted it to do," Hardie added. 

Because the change in Emmy was so dramatic, their friends started a Givealittle page to fund another visit.   

Hardie has also been working 60-hour weeks to help support the six trips they've now taken to the Gold Coast for their daughter's intensive therapy.  

She then started sitting up independently - now she can almost commando crawl and has also stood up on her own.

Cerebral Palsy Society of New Zealand researcher Amy Hogan said while there are paediatric rehabilitation gyms in New Zealand that are mostly privately operated, there are no special centres dedicated to intensive therapies.   

"Intensive therapy is still a relatively new initiative in New Zealand. However, there are people offering intensive blocks of physiotherapy and movement-based training, rather than the traditional model of spreading occupational therapy and physiotherapy out over many months," Hogan told Newshub.   

"There is no dedicated funding for intensive therapy in New Zealand. However, families and individuals with cerebral palsy can apply to use avenues like Individualised Funding to do intensive therapy blocks," she added. 

Hogan said people should have access to a variety of therapy programmes that could potentially benefit them, using an accessible funding model. 

Emmy spent a month in the hospital on breathing support.
Emmy spent a month in the hospital on breathing support. Photo credit: Supplied

"Our concern is that services like intensive therapies are almost entirely privatized and rely on the individuals to find them, advocate for funding and make arrangements," she said.

"This puts considerable burdens on caregivers that may be stressed with other responsibilities and limits who can access these programmes. 

"There should be a home-grown option available to anyone who sees benefit."

McNeill and her husband believe there needs to be more funding for Kiwi children with cerebral palsy to receive therapies.   

The family is currently locked in another battle, challenging a decision by ACC to decline Emmy's treatment injury claim.  

ACC deputy chief executive of service delivery Amanda Malu told Newshub: "The balance of medical evidence didn't find a link between Emersyn's condition and a failure to provide medical treatment."   

McNeill believes all children who need intensive therapy should be able to access it.   

"It breaks my heart. We go to the hospital and New Zealand group therapies and there's other kids like Emersyn who were born at similar times and they haven't had the same opportunities as Emmy. I almost feel guilty," she told Newshub.   

She recently helped organise for Australian therapists to come to New Zealand. They held a three-week programme in Rotorua for 10 children.   

"In those three weeks, every child met a milestone," McNeill said. 

She recalled the moment she saw a boy of about school age sitting up for the first time. She told Newshub there was "not a dry eye" in the room. 

Emmy's family are hopeful she will one day be able to walk independently.
Emmy's family are hopeful she will one day be able to walk independently. Photo credit: Newshub

"It was really good to connect with families in similar situations as they get it. Friends and families may find it hard to relate. But it was nice to meet other families fighting the same battle," Hardie told Newshub.  

McNeill and Hardie hope that by sharing their daughter Emmy's story, they will help others see the potential in their own children.   

"You imagine what life is going to be like, and I used to be so upset because I was like 'I'm never going to walk her down the aisle, I'm never going to hear her walk down the hallway'," she said. 

"I used to cry so much about the unknowns and what I thought her life was going to look like but she's just so happy." 

Their next goal is to get Emmy walking independently.   

"A friend of mine is getting married and it would be really cool if she could walk down the aisle as the flower girl. That would be my goal," McNeill smiled.

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