Parents of children with brain injuries call for funding for intensive therapy

It was a moment that captured the hearts of Newshub readers and viewers back in December.

The moment was of Rangiora toddler Emersyn Hardie, known as 'Emmy', standing for the very first time.

While it's a milestone many parents look forward to, Emmy's parents were told it was a milestone their baby would likely never achieve.

Emmy was born not breathing. She needed 16 minutes of CPR and suffered a severe brain injury. She was later diagnosed with cerebral palsy.

Emmy's parents Mackenzie and Jared were told their baby would likely never talk, walk, eat or barely move.

"They don't look at the individual child at the hospital. They just look at the MRI and the damage and they're like 'this is what's gonna happen and your kid's not gonna do this'," her mother Mackenzie McNeill told Newshub.

Emmy's family fundraised to take her to the Gold Coast to undergo what's known as "intensive therapy".

"We're really looking at the brain and neuroplasticity so being able to have access to a movement and repeat it. Many of our kids haven't reached that rolling or head control milestone so having therapy to just give them that strength and control and that feeling of autonomy over their body," said Centre of Movement director Emily Pennisi.

A course of intensive therapy will see children taking part in a variety of exercises for three hours a day for three weeks.

Many like young Emmy are having phenomenal success.

After completing multiple courses of intensive therapy, Emmy has learnt to sit, stand and is now trying to walk independently. She's already doing so using a walker.

"She's standing independently at her play table and her play kitchen now so I think she will get there," Mackenzie said.

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

There are no specialist intensive therapy centres in New Zealand, nor is there any funding for children to have it.

With the encouragement of Emmy's family, therapists from the Centre of Movement in Australia have just held a three-week course in Christchurch.

"Families in Australia are able to access 250 hours of intensive therapy. When you come over to New Zealand, unfortunately they don't have the access," said Steve Pennisi.

Parents like Alice Hosted from Kerikeri are paying privately around $9000 for the three-week course.

Her nine-month-old baby Archie has developmental delays.

"I had a pretty harrowing birth and the result of it was that Archie was born not breathing. As a result of that experience he has a brain injury," Hosted told Newshub.

"It's a really terrifying place to be. The outcome that you're given is really uncertain."

Hosted came across Emmy's story on social media and signed Archie up for the intensive therapy course in Christchurch.

She said young Archie had difficulty holding his head up but after intensive therapy is seeing a huge improvement.

"It's just been amazing to see him get up off the floor and experience what the world's like at that level. It's been such hard work for him. He's just so tenacious and he's a beautiful boy and we're incredibly proud of him," said Hosted. 

"Archie will be walking independently. When I was a kid, my dad took us all on a tramp to Mount Herbert when we turned five. That's what I want for Archie. 

"The gains we're seeing is that the kids can go to a mainstream school, they're getting included in all the kids' sports and they're able to keep up with their siblings," Emily Pennisi told Newshub.

"It is so exciting just to see the change you get when a kiddo reaches a milestone like they lift their head for the first time or they prop with their arms or hands or they take their first step or they stand independently for the first time.

"Probably the most exciting one is when they do take independent steps and typically that's the big goal for most families and when you see that - words can't explain. It's an absolutely beautiful feeling," Steve Pennisi told Newshub.

Hosted described the children undergoing intensive therapy as little "warriors".

"They have had every barrier put in our way and they are just grinding to get these results."

Both McNeill and Hosted said the New Zealand government should be funding intensive therapy for children who need it.

"I understand that you have to consider carefully what therapies you fund but there is so much research that supports this. Australia is way more at the ready to fund this kind of therapy so I just think it's a real let-down. We are all taxpayers and we're not getting what we need in our hour of need it seems. It's really upsetting," Hosted told Newshub.

"Doesn't matter where you live, what money you have, who you are - they should all get this type of therapy," added McNeill. 

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