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Mum of Kiwi Boy with Rare Disease Says 'Parents Pull Their Children Away'

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Wednesday, February 20, 2019

Head down, fixated on an iPad screen, it takes some gentle prodding from Iziyah Moemai's mum, Dani, to get his attention.

It's his second interview of the day and, before we get into it, he's already showing signs he's over it.
As he answers questions, Iziyah starts to relax - humour is key to get him to open up.
Just shy of his eighth birthday, Iziyah is talking about starting at an Auckland mainstream primary school for the first time after attending the Blind and Low Vision Education Network's Homai Campus School for the past two years.
He shares his love of playing soccer at lunch time, is good at spelling tests and likes drawing. He's also got a younger sister who is taller than him.

"I'm her big, little brother," he says with a huge smile.

He has the characteristics of a lively Year 3 little boy, excited at the idea of play time and is a caring older sibling, but it's Iziyah's ongoing health battles which make him a brave fighter and his medical history which makes his appearance stand out from his peers.

He cannot see out of one eye and has a small tunnel of vision in the other - this will eventually progress to blindness with no definite timeline of when he will completely lose his vision.

Six years ago, when he was two-years-old, Iziyah was diagnosed with a rare immune disorder called chronic granulomatous disease (CGD).

He had a third of one lung removed due to an abscess and, six months later, had a bone marrow transplant in the hope to cure the CGD.

This was successful. However, in 2014 he developed symptoms of Chronic Graft vs Host Disease - a complication of the transplant- affecting his mouth, gut, skin and lungs.

He completely loses interest when we start talking about the bullying he's endured because of his facial pigmentation.

"He kind of denies it because it's a bit sensitive. He gets asked if he has mud on his face or has been burned," his mum tells me later.

Although it was scary at first meeting new people and everything was "unfamiliar", at his new school, Iziyah says the kids have been nice. If the other kids ask any questions, he gives it to them straight.

"I just say a lot of surgeries when I was little and it's just scars from that."

Generally, that's all the explanation they need and will move on to seeing him as the cool, energetic boy he is.

Dani agrees that school has so far been amazing. Everyone is kind and caring to Iziyah.

Out in public, it's different. Dani says that at malls, cafes, restaurants, supermarkets, the playground and the beach he gets stared at and whispered about.

"Parents pull their children away," she says.

Dani says she will notice people whispering or hear people say, "don't stare, it's rude" which can be frustrating.

"I just wish people would teach their children to say 'hi' rather than telling them to shush and not say anything," she says.

"When it's the wrong day it could just completely get to him."

Iziyah says he shared his story to help others who live with medical conditions, so they can be brave. Just like he is.

Author: Fiona Connor
Source: Newshub
4.0 from 1 vote
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