Family of Sydney baby without eyes hopes to raise $100K for treatment

The family of a baby born without eyes in Sydney is hoping to raise $100,000 for his treatment. Ten-month-old Archie Innes was born with a rare condition called Anophthalmia, which left him without eyes.

His mother, Fiona Gould, explained on his GoFundMe page that Archie was diagnosed with SOX2 Syndrome shortly after his birth. The genetic condition affects one in every 250,000 births. It’s so rare that there is only one other recorded case in the world.

In addition to being “black blind,” which means he has no light perception at all, he also has severe motor delay. He has been struggling to lift his head up since he was two months old. Archie was also diagnosed with neurosensory hearing loss at four weeks, requiring him to wear hearing aids.

He has been using a Nasal Gastric tube since he was two months because he has mild/moderate silent aspiration and has developed an oral aversion. Archie was found to have several brain abnormalities as well.

The little guy needs support from a huge multidisciplinary and therapeutic team to live. He is awaiting dates for three potential surgeries for his eyes, ears and tummy.

Gould is unable to return to full-time work because she has to take care of Archie. They have to rely on one parent income from Archie’s father, Steve Innes, who also had to take a lot of time off work to be there for his son. The couple also has a 3-year-old daughter named Alba.

Archie’s parents are asking for financial help of at least $100,000 for his health bills. They plan to get private health cover for him, get him additional intensive therapies, and pay for other expenses associated with his hospital appointments, including car parking and petrol fees.

Gould also told the Daily Mail that they were hoping to raise enough money to get Archie a pioneering eye treatment in the US, which would allow him to see with robotic eyes someday. “Our ophthalmologist has suggested that in 10 years’ time, they will be able to plug something into the back of the brain that will enable him to see images,” she said.

“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.”

In just 4 days, Archie’s fund has already raised at least $28,000. The family is hoping to raise $100,000.