'Miracle' baby Archie born without eyes one of just two cases ever diagnosed

SYDNEY, AUSTRALIA, SMH - January 22: Archie Innes with his mother Fiona Gould, father Stevie Innes and sister Alba at Dee Why on January 22, 2017 in Sydney, Australia.  (Photo by Christopher Pearce/Fairfax Media)
SYDNEY, AUSTRALIA, SMH - January 22: Archie Innes with his mother Fiona Gould, father Stevie Innes and sister Alba at Dee Why on January 22, 2017 in Sydney, Australia. (Photo by Christopher Pearce/Fairfax Media)

Archie Innes lives in a world he cannot see. The one-year-old has SOX2 anophthalmia syndrome - meaning he was born without both eyes.

SOX2 syndrome - abnormal development of the eyes - affects one in 250,000 people worldwide.

But Archie is almost unique. The genetic mutation left him with no eyes at all, with only one other case recorded globally. He was also born with a hearing impairment and moderate aspiration, which can cause fluid to enter his lungs.

His mother, Fiona, explained that these issues, along with severe gross motor delay and several brain abnormalities, have had a major impact on his development.

"Because he was born black blind, he doesn't have any spatial awareness, and even the most basic movements are complicated to teach him," she said.

Fiona and her husband Stevie, who live on Sydney's northern beaches, were told of Archie's condition when she was 28 weeks' pregnant. Their obstetrician advised that he would be born without eyes and have possible complications due to brain abnormalities.

"On that day, our lives changed forever," Mrs Innes said.

Archie has spent nearly half his short life in hospital and he receives food and fluids through a tube.

Regardless of his obstacles, Mrs Innes stressed that Archie was a "smiley baby" who was "beginning to reach out and touch things" despite his delayed development.

He has regular visits from a guide dog for movement and awareness training and enjoys being spoken to, lying on his side to play with musical toys. The little boy also enjoys head rubs and communicating with the family through his own special language.

The recent removal of Archie's face tape has opened up another world for the one-year-old - the family has introduced him to water, taking him to the beach and dipping his toes in a pool.

Mrs Innes remained hopeful a "potential, futuristic treatment" would one day help her son.

"Something could be plugged into the back of his head that allows him to sense images, or to see something," she said. "But this could be years from now.

"Currently we want him to have as much therapy as possible - he needs lots of exposure to get social awareness and be independent."

Overall, the family is positive, and Mrs Innes encouraged other families in similar situations to remain hopeful.

"It's just a different journey but it's an exciting one," she said. "We are very lucky, and we're learning so much from [Archie]. We now live life to the fullest - something we took for granted before."

"My hope for Archie is that he's happy. I hope he will one day be able to achieve a level of independence that allows him to access the world. I want him to experience love and friendship, and to reach his potential, whatever that may be."

The family has set up a personal funding page to help pay for his immediate and ongoing care.

This story 'Miracle' baby Archie born without eyes one of just two cases ever diagnosed first appeared on The Sydney Morning Herald.