Parents of baby born without eyes speak out on rare condition

Fiona Gould, with Archie, husband Stevie and daughter Alba
Fiona Gould, with Archie, husband Stevie and daughter Alba
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WHEN Fiona Gould and her husband Stevie Innes found out their baby son would be born without eyes, it was a day which changed their lives forever.

But despite the daily challenges that come with ten-month-old Archie’s rare condition, anophthalmia, the couple are determined to give him the best start in life as possible.

The couple, who lived in Edinburgh for several years before relocating to Sydney, Australia, are now hoping to raise the equivalent of more than £50,000 to help pay for their son’s care.

But for Fiona, who taught as a primary school teacher in East Lothian before they emigrated four years ago, it is just as important to also raise awareness of visual impairment.

Fiona, 40, explained Archie’s condition was first detected after a routine scan when she was 28 weeks pregnant and said the following weeks were a whirlwind of anxiety as they tried to work out how they would cope with a blind baby.

Archie’s genetic mutation is so rare that there is only one other recorded case in the world and he has been in and out of hospital ever since his birth in January.

The brave youngster has had to wear hearing aids from the age of four weeks and has also developed an oral aversion due to being fed through a nasogastric tube from two months.

Fiona said being able to raise extra funds would make a “massive difference” to the entire family and could cover everything from specialised equipment to the cost of travelling to and from hospital.

She said: “Because of Archie’s support needs and because he’s so complex he can’t really go into daycare. We can’t make ends meet and he needs specialised equipment now.”

However, Fiona said what started as an online fundraising page for Archie’s care quickly took on the shared purpose of spreading awareness.

She said: “I have become quite a big advocate as a parent of a child with a disability and how you don’t have to feel sorry for him, he’ll just learn in a different way.

“He has enlightened my life so much by his resilience, by the way he copes with things – he’s such a happy boy.

“I have learnt since having him there’s quite a few people who go through hardship but it’s not a terrible thing to have a child with a disability, it’s just a different journey.”

Thankfully Fiona and Stevie, who also have a three-year-old daughter, Alba, their friends and relatives – many of whom still live near Edinburgh – have been quick to rally round in support.

As well as covering the costs of Archie’s care, the couple – who got married in the Capital and lived in Newington – are hoping to raise enough cash to fund a trip to America in 2019 to meet top ophthalmic experts at a medical conference.

Until then, they are keen to continue spreading the word about visual impairment.

Fiona added: “I just don’t think enough is written about it because I think people find it so difficult to imagine being blind, it’s horrific.

“But he [Archie] will just have a different way of looking at the world. It’s not necessarily any better or worse than ours, it’s his way.

“He has got every right to be in society and live his life – just because he’s blind it shouldn’t stop him in any shape or form.”

Donations can be made online at gofundme.com/4p3tc9s.

florence.snead@jpress.co.uk