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Sydney baby born without eyes
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18.11.2018

Sydney baby born without eyes

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A Sydney mum is hoping to raise $100,000 for pioneering treatment after her son was born with no eyes.
Archie Innes, aged 10 months, was born with rare SOX2 Syndrome, leaving him blind, hearing-impaired and being fed from a tube, but pioneering treatment may one day allow him to see the world through robotic eyes.
He was also diagnosed with severe motor delay which means he finds it hard to lift his head up.
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Mum Fiona Gould has raised more than $10,000 in just two days on the GoFundMe page to pay for pioneering sight treatment in the US — meaning he might one day be able to see.
She said: “He’s my miracle man, he is a truly amazing little boy and he’s doing really well.
“We found out at 33 weeks during a foetal MRI that he would have no eyes, and that brought a lot of shock and anxiety about how he’d be.
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“In the end, his blindness became the best case scenario because of all the complications which come with his condition.
“There were lots of other things that happened and even today every day is a new challenge, but he’s a really interesting little boy.”
“Our ophthalmologist has suggested that in ten years time they will be able to plug something into the back of the brain that will enable him to see images.
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“That is what is being developed at the moment, so we are hoping that we can afford to give him that treatment, but it’s going to be expensive.”
“There are not many children that are black blind — most children can see something — but he has a prosthetic in one eye but not the other.
“I’m hoping he can be independent as he grows up and there are a lot of therapies for his condition.
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“Vision is the main sense which links the others, and he needs to find motivation to move around.
“Children learn by seeing, but he’ll never naturally crawl or walk and we’ll need thousands of dollars of equipment to help him.”
Archie is currently on the waiting list for yet more surgery — he needs grommets in both ears, a gastric tube in his stomach and eye surgery for his second prosthetic.
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He currently has a conformer in the other eye, to stretch the orbit for the other prosthetic.
Mum-of-two Fiona, 40, says many parents are hesitant to talk about infant blindness because it’s “so hard to cope with”.
Despite the struggles of caring for a disabled child, Fiona says Archie has helped her live each day to its fullest.
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“Black blind” is a term for when somebody cannot see anything whatsoever, meaning Archie’s entire world is black.
She added: “The long term goal for me is that he’s happy, has friendships, and is as independent as possible. “
“I kind of got to that point where I realised how much love he was giving me and how much love I felt for him and his diagnosis didn’t matter anymore.
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“At first, I was devastated, I won’t deny that, but then with each day you are holding him and he’s like any other baby.
“I have learnt more in the last nine months from my miracle man than I have in my lifetime.
“I now live each day to its fullest and appreciate everything.
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“I have learnt to live in the present and am trying to focus living day to day as you never know what is around the corner. “
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