Mother of baby boy born without eyes pleads for help
A determined Sydney mother is hoping to raise $100,000 for pioneering treatment after her son was born without eyes.
Archie Innes, 10-months-old, was born with rare SOX2 Syndrome, leaving him black blind, hearing impaired and being fed from a tube.
'Black blind' is a term for when somebody cannot see anything, whatsoever, meaning little Archie's entire world is black.
But pioneering treatment may one day let him be able to see the world - through robotic eyes.
The brave tot was also diagnosed with severe motor delay which means he finds it hard to lift his head up.
Mum Fiona Gould, originally from Kent, UK, has raised more than $44,000 via a GoFundMe page to fund pioneering sight treatment in the US - meaning he might one day be able to see.
"He's my miracle man, he is a truly amazing little boy and he's doing really well," she said.
"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.
"In the end, his blindness became the best case scenario because of all the complications which come with his condition."
There is a glimmer of light at the end of the tunnel for Archie and his family after his orphthalmologist suggested new technology developing over the next 10 years will allow him to see images.
"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," Fiona said.
"I'm hoping he can be independent as he grows up and there are a lot of therapies for his condition.
"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.
Mum-of-two Fiona, 40, says many parents are hesitant to talk about infant blindness because it's 'so hard to cope with'.
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Despite the struggles of caring for a disabled child, Fiona says Archie has helped her 'live each day to its fullest'.
"The long term goal for me is that he's happy, has friendships, and is as independent as possible," she said.
Fiona says she initially struggled with Archie's diagnosis but quickly overcame her doubts.
"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," she said.
"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."
