A Sydney mum-of-two is attempting to raise $100,000 for treatment for her son who was born without eyes.
At just 10-months-old, Archie Innes, dubbed “miracle man” by his mum, has had a difficult little life. He was born with rare SOX2 Anopthalmia Syndrome, leaving him blind, hearing-impaired and being fed from a tube. His mother, Fiona Gould, explains on a fundraising page setup by the family; Archie’s specific mutation is so rare, there is only one other recorded case in the world.
Archie’s mum Fiona, dad Stevie and big sister Alba, are fundraising for pioneering sight treatment for the 10-month-old baby born without eyes.
“From the first moment, we held him in our arms our hearts poured with love at his strength, courage and resilience,” said Fiona.
On top of his unusual diagnosis, Archie has a severe motor delay meaning he struggles to lift his head on his own.
“As you can imagine with each new day comes a new battle, a new challenge to find the energy, courage and strength to organise, facilitate and manage the amount of care Archie requires and desperately need,” writes Fiona, who has not been able to return to full-time work since Archie’s arrival.
Archie’s parents learned their baby would have no eyes during a foetal MRI at 33 weeks.
“Our lives changed forever as we were given the news,” said Fiona.
Archie has been born black blind, meaning he has no light perception at all.
Since the launch of Archie’s fundraising campaign the family have raised nearly $50,000 to pay for pioneering sight treatment in the US which might help him to see one day.
Explaining the “difficult and uncomfortable” decision to ask for financial help, Fiona writes: “We really want to provide him with as much early intervention as possible to give his brain the chance to develop to the best of its ability and to learn new pathways.”
While Archie’s life so far has been trying to say the very least, his mum says he is spirit hasn’t been dampened: “Everyone who meets Archie is instantly drawn to his gorgeous, contagious personality and beautiful smile.”
Archie’s mum describes her 10-month-old as a “happy, content wee boy”.
Brave little Archie is currently on the waiting list for more procedures – he needs grommets in both ears, a gastric tube in his stomach and eye surgery for his second prosthetic.
He currently has a conformer in the other eye, to stretch the orbit for a prosthetic.
“We really want to give our little boy the best opportunity to become independent and reach his full potential,” says Fiona.
If you wish to donate to Archie, visit the family’s fundraising page here.
