Uncertain future of Waiouru toddler with rare brain condition video

MURRAY WILSON/STUFF

Elijah North has microcephaly, a condition that affects brain growth.

The parents of a young boy who suffers from a rare brain disorder hope that one day their son might be able to communicate with them when he is hungry or hot, and gain some form of movement.

But now, two-year-old Elijah North can't walk and talk yet, and he is on a feeding tube overnight.

Elijah has microcephaly, a condition that leaves him with a small head and a brain that doesn't grow as well as it should, as well as an undiagnosed genetic condition.

Elijah North has microcephaly, which means his brain does not grow as well as it should.
MURRAY WILSON/STUFF

Elijah North has microcephaly, which means his brain does not grow as well as it should.

Mum Laura North said doctors realised something was wrong within hours of his birth, but it took a few weeks until they received the diagnosis of microcephaly.

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Elijah and mum Laura North recently went to Australia for Elijah's treatment at the Neurological and Physical ...
MURRAY WILSON/STUFF

Elijah and mum Laura North recently went to Australia for Elijah's treatment at the Neurological and Physical Abilitation Centre.

It also leaves Elijah with severe vision problems and developmental delays.

Laura North and her husband Tane, who live in Waiouru, heard about a treatment available in Australia at the Neurological and Physical Abilitation Centre and decided to give it a go.

"Someone said you can get 12 months of progress when you go there and I was a bit dubious, but in terms of speech and feeding we got a huge gain," Laura North said.

The centre offered traditional and non-traditional therapy programmes for adults and children and Laura North said after their initial three-week intensive treatment, it was recommended Elijah went three to four times a year.

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But the treatment was expensive.

Their recent trip cost $8000, excluding flights and accommodation.

Both Laura and Tane North are captains in the army and said the Defence Force had offered massive support.

The national Returned and Services' Association donated $10,000 and the Auckland RSA gave $5000 to help get Elijah and Laura North to Australia for the first treatment.

The Waiouru community had also been a huge support, donating money as well as organising fundraisers for the family.

Every week, Laura North drove from their family home to Whanganui and Wellington hospitals for appointments and conductive education therapy.

This week, they were moving to Wellington to make life a little easier, as Tane North was about to head off on a year-long deployment.

This leaves Laura North caring for Elijah and their two other children, who are nine and four, as well as working part-time in the army.

With an eye to the future, she and her husband would like Elijah to be able to communicate with them in some way and also to gain some type of movement.

It was also possible Elijah's genetic condition would be diagnosed, as blood samples were being sent to the United States for further testing.

"Part of me wants to know and part of me doesn't," Laura North said.

"Because we don't know anything there's still a lot of hope, so I'm still hoping he will walk and communicate.

"But, worst-case scenario is they say 'it's this' and that piece of hope is taken away."

The hardest thing for Laura North was thinking about what kind of future Elijah would have.

"You always think your kids are going to go to school and university and get married, but it's hard to think about what his life will be like.

"I try to focus on right now."

People can donate to the North family through their bank account, 03-1525-0070778-25.

 - Stuff

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