Mother of 10-month-old boy born without eyes pleads for donations towards pioneering bionic implants

A determined mother is hoping to raise £58,000 for pioneering treatment for her son who was born without eyes.

Archie Innes, aged ten months, was born with a rare genetic disorder that has left him 'black blind', hearing impaired and needing feeding from a tube.

He has SOX2 syndrome, where babies are born with abnormal development of the eyes and other parts of the body.

'Black blind' is a term used to describe those who cannot see anything, whatsoever, meaning little Archie's entire world is dark.

But pioneering treatment – not currently available on the NHS – may one day allow him be able to see the world through robotic eyes.

The brave infant was also diagnosed with severe motor delay which means he finds it hard to lift his head up.

Mother-of-two Fiona Gould, who lives in Sydney, Australia, but is originally from Kent, has raised more than £6,000 in just two days to fund the pioneering sight treatment in the US.

The 40-year-old said: '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.

'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.

'He's my miracle man, he is a truly amazing little boy and he's doing really well.' 

We were shocked 

Fiona Gould and Archie's father Steve found out that their baby would have no eyes when she was 33 weeks pregnant.

'That brought a lot of shock and anxiety about how he'd be,' said Fiona. '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.'

Babies with SOX2 – estimated to affect 1 in 250,000 individuals – may also have seizures, brain abnormalities, slow growth, delayed development of motor skills – such as walking – and mild to severe learning disabilities. 

'I'm hoping he can be independent as he grows up and there are a lot of therapies for his condition,' Fiona explained.

'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.'

State-of-the-art treatment

Bionic eye implants work by receiving visual information from a miniature camera mounted on glasses worn by the patient.

The images are converted into electrical pulses and transmitted wirelessly to an array of electrodes attached to the retina.

The electrodes stimulate the retina's remaining cells which send the information to the brain.

Archie has already been fitted with a gel implant in one eye – a clear plastic conformer shell is fitted to hold the shape of the eye socket – to help his face grow in a way that will enable him to wear prosthetic eyes in the future.  

He 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.

It is expected bionic eyes will be made available on the NHS for the first time – but not for another two years.

We've learnt to live in the present  

Fiona 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, she said Archie has helped her 'live each day to its fullest'.

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.

'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.

'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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