He’s been named the ”miracle man” by his adoring parents – and it’s obvious why.
Born with SOX2 anophthalmia syndrome, one-year-old Archie Innes, has no eyes and is completely ‘black blind’, meaning his world is entirely dark.
‘He has been such a blessing for our family,’ Archie’s mother, Fiona Innes, told FEMAIL.
‘We have learned to appreciate life to the fullest and to enjoy each and every day we have together as a family.
Born with SOX2 anophthalmia syndrome, one-year-old Archie Innes (pictured), has no eyes and is completely ‘black blind’, meaning his world is entirely dark
‘Archie has brought so much joy to so many who surround him. We simply couldn’t imagine life without him it in it, he’s incredible.’
Archie also battles severe gross motor delay, mild-to-moderate hearing impairment, and moderate aspiration (can cause fluid to enter into his lungs), which necessitates the delivery of food and fluid through a tube.
Mrs Innes and her husband Stevie, who also have a three-year-old daughter, Alba, discovered there was a problem with Archie’s health during the second trimester.
‘At 28 weeks into my pregnancy with Archie, the doctors performed a full scan and identified a brain abnormality,’ said Mrs Innes.
Archie (pictured with big sister, Alba) also battles severe gross motor delay, mild-to-moderate hearing impairment, and moderate aspiration (can cause fluid to enter into his lungs), which necessitates the delivery of food and fluid through a tube
‘We were referred to Royal North Shore Hospital (RNSH) for a foetal MRI scan to determine exactly what it was.
‘At 32 weeks, we had the MRI scan. Shortly after returning home we received a call from our doctor, asking us to head back to hospital.’
Mrs and Mr Innes met with their obstetrician, who advised them that their son would be born without eyes.
‘On that day, our lives changed forever, because we were given the news that our beautiful baby was going to be born without eyes,’ Mrs Innes recalled.
Post-birth, Archie was diagnosed with SOX2 Syndrome, with a genetic mutation so rare, that only one other case has ever been recorded in the world.
Parents Fiona and Stevie (pictured with their children, Alba and Archie) have named their son ‘miracle man’
His prognosis has continued to challenge his family, with the ongoing presentation of complications associated with SOX2 Syndrome.
In his short life, Archie has since been diagnosed with neurosensory hearing loss, multiple respiratory infections, mild-to-moderate aspiration, multiple brain abnormalities which are yet to be completely understood, and severe motor delay.
To date, Archie has spent close to half of his life in hospital, and when not in hospital, he makes almost daily visits to a plethora of doctors and paediatric physicians.
‘My weeks are crazy with Archie. Almost every day, we have to see different doctors,’ Mrs Innes explained.
‘It’s extremely hard to get Archie into a routine because of all the therapy and medical appointments [and] hospital admissions.
‘We see ophthalmologists for his eyes, and regularly have his hearing aids re-moulded due to his growth. We attend feeding clinics at which speech pathologists and dieticians feed him through his nasal gastric tube. He also undergoes monthly reviews with his paediatrician,’ she added.
‘Archie has brought so much joy to so many who surround him. We simply couldn’t imagine life without him it in it, he’s incredible,’ said mother Fiona Innes
‘We have neurologist and cardiologist appointments scheduled for every six months. He visits two different physiotherapists regularly to assist with his movement, along with three occupational therapists who aid his development. He also has a guide dog visit regularly for movement and awareness training.’
Yet despite Archie’s monumental health hurdles, Mrs Innes said she wouldn’t change a thing.
She said her dream is that little Archie will be able to one day live a fulfilling life, where he can reach his full potential and establish friendships.
‘Archie’s a smiley baby, and is very social. He makes lots of sounds, and despite his extremely delayed sense of spatial awareness, he is beginning to reach out and touch things. He’s a beautiful child.
‘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,’ she said.
‘I want him to experience love and friendship, and to reach his potential, whatever that may be.
Post-birth, Archie was diagnosed with SOX2 Syndrome, with a genetic mutation so rare, that only one other case has ever been recorded in the world
‘We’ve already discussed with Archie’s ophthalmologist, potential, futuristic treatment, whereby something could be plugged into the back of his head that allows him to sense images, or to see something, similar to the way that a cochlear implant aids hearing. But this could be years from now.’
However, the medical and treatment costs for Archie has left the Innes family struggling.
To help pay for Archie’s immediate and ongoing medical care, his family has set up a personal funding page.
They hope to raise AUD$500,000 to cover the costs throughout his childhood, which include intensive therapy, physiotherapy, speech therapy and medical and specialist equipment.
‘It’s extremely challenging to set a funding goal because we simply don’t know the level of care that Archie will require over the years,’ Mrs Innes said.
‘Any contribution, whether large or small, would make a genuine difference to our lives.’
She said reaching half a million dollars would be ‘life-changing’.
‘We would be eternally grateful and thankful from the bottom of our hearts,’ she told Daily Mail Australia.
‘It would mean Archie will receive all the therapy and medical specialists he requires to meet his full potential.
‘As a parent this is all you want for your child. To know you have done everything possible.’
If you would like to contribute, please head to their GoFundMe page.