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'Our baby's condition is so rare, it's the second case in the world.'

Content warning: This post contains images some readers may find confronting.

At 28 weeks, Fiona Gould had a routine scan of her baby. Then came the phone call from doctors – the one no parent wants to receive.

“You and your partner need to come in immediately, there’s something wrong with your baby.”

After a completely normal and healthy pregnancy, the mum-of-one and her partner were told baby Archie would be born with anophthalmia – a brain abnormality so rare, there’s only one other recorded case in the world.

In the simplest terms, this meant Archie would be born without eyes.

“When we found out our baby was going to have no eyes… that was the worst moment of our life,” the primary school special needs teacher from the UK told Mamamia.

“Not knowing what it was and doing that 40-minute drive to the hospital suspecting what it would be was horrible. We were really scared and anxious about how would we deal with a blind child and seeing a baby with no eyes, but it’s turned out that the blindness is the least of our worries.”

Now 10 months, Archie lives with SOX2 syndrome, a genetic condition affecting one in 250,000 births. Because of this, his development is far slower than that of a typically developing child.

“Initially [when we brought him home], he wasn’t very different, he was doing what other newborn babies do. But now it is hard because he’s doing things but it’s so so so slow,” Fiona said.

“He’s still trying to get his head up, which is something a two-month-old would do. He’s beginning to open his hands to hold stuff which is amazing for us – it’s like he understands things but his body lets him down. But he’s going to make the milestones in his own time.”

You can see beautiful Archie and his family in the gallery below…

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Archie is the younger brother to Fiona’s first child, three-year-old Alba. To Alba, Archie isn’t different. She doesn’t understand why people say things when they’re playing at the park or walking down the street. He’s just her little brother, who she loves.

“We didn’t tell her [before he was born], we didn’t make a big deal about the fact he was going to be born without eyes, so when she arrived in hospital, the first thing she said was, ‘why doesn’t he have eyes?’

“I just said, ‘darling are all born differently – some are born with eyes, some aren’t, some babies are born with fingers, some aren’t, some babies are born with blonde hair, some aren’t. We have been gifted this beautiful baby that doesn’t have any eyes, and we are going to look after him.’

“She said, ‘mummy can we go to the shop and buy him some eyes on the way home?’ She’s a good advocate for him, she doesn’t know any different, she accepts him. We’re quite lucky.”

Despite the incredible support the family have sought from groups like Guide Dogs Australia, Vision Australia and their community, raising Archie comes with a unique set of challenges. His world consists of hospital visits, feeding tubes, paediatricians, eye specialists, ophthalmologists, oculoplastic surgeons, audiologists, genetics teams, respiratory specialists, physiotherapy, and speech therapy – all of which are expensive.

Through their GoFundMe page, which has raised almost $14,000 in just four days, Archie’s family hope to be able to fund the ongoing specialised care he needs to reach his potential.

Listen: How to talk to kids about disabilities from someone with one (post continues after audio…)

For now, Fiona and her family take each day as it comes, and do their best to remain positive for their unique, joyful baby with an infectious personality and beautiful smile.

“Archie is so resilient, it’s outstanding. The way he deals with things, he has to have a tube down his throat all the time and he still smiles.

“The most hurtful thing people say to me is, ‘if you had found out at 20 weeks, what would you have done?’ I would’ve still had my baby, he’s my son. Everyone stops us in the street, most people are positive but some find it quite confronting. Some people say ‘oh what a shame’ and I understand that’s their first instinct, but people don’t need to feel sorry for him.

“For his future – I’m hoping he’s happy, that he has friendships, he can be as independent as possible, and that he becomes the person he wants to become, whoever that may be, and that he does it in his own time. If had a crystal ball that could show me 10 years down the track that’d be amazing, but we appreciate each and every day we have with Archie.

“Don’t get me wrong, it’s really hard. There are days I wish I had a typically developing child, but that’s a really awful place to go. I’m in a mother’s group and all the children are standing and walking, but I just appreciate that Archie was meant to be in this world for a reason, otherwise he wouldn’t be here. That’s what I truly believe.”

To find out more about Arhcie and his family, and to support them in getting him the help he needs to grow and thrive, visit their GoFundMe page.

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