Fiona Gould and her husband Steve found out that their son Archie Innes would be born without eyeballs after an MRI scan. But the worst was yet to come.
The genetic exams showed that Archie had the Anophthalmia SOX2 Syndrome, a condition that affects one of every 250,000 newborns.
The people with this genetic disease are born without eyeballs and may have other problems such as convulsions, delay in motor development and problems with learning.
Ms. Gould explained that this condition is so rare that there are only 2 cases reported in the world.
She also explained that Archie's disability has delayed his motor abilities, such as holding his head up, rolling or using his hands. Archie also has problems with hearing and eating, so he has to be feed with a nasal tube.
Ms. Gould, 40, told what she lived the day that she received a call from the Royal North Shore Hospital when they discovered that Archie would be born with "black blindness". She told that she was called three hours later and they told her to bring her husband.
She said that they made the scan again and told them that the baby didn't have eyes. She was shocked. Ms. Gould said that they tried to be positive about the diagnosis; the blindness is not the end of the world. She thought that the baby would learn in a different way.
As a teacher for special kids, Ms. Gould knew a bit about what her son would
need and she approached several specialists before he was born. Now, their days
are full of doctors’ appointments and the baby is submitted to physiotherapy
three times a day.
Vision Australia, Guide Dogs, RIDBC and Cerebral Palsy Alliance have helped in many therapies that the kid needs, including hydrotherapy, physiotherapy and mobility training.
Archie's mother commented that to the family was given a small room - a tactile box with a wooden floor to help their son with his mobility. He's already trying to walk.
The development depends on sight for the signals; the sight is the only sense that unites them all.
Archie's world revolves around physical and verbal signals. He has a wave
machine in his room that works at night, thus he knows when it's time to sleep;
he also has a song to wake up and he understands little taps that mean that
it's time to change his diaper.
His mother sings to him a lot of invented songs, and she repeats his name again and again.
The specialists have already inserted a conformer that looks like a prosthesis in the left eye and they have implemented the other conformer in the left eye to expand its orbit.
Ms. Gould’s ophthalmologist has given them the hope that in ten years they would be able to connect something to the back of his brain that will let him see images.
This is how the things are going at the moment; they hope to be able to do it as the operation would be quite expensive.
The family has moved to Sydney from the United Kingdon four years ago. They
also have a 3-year-old daughter, Alba.
However, the daily medical needs of the boy are very expensive, and any surgery can be a problem.
Archie needs washers in both ears, a gastric tube in the stomach to replace the nasal tube and the surgery for the second prosthesis, and a specialized team of people to take care of him every day as well.
Ms. Gould hopes to raise 100,000 dollars to cover the treatment and the
family's rising costs. Since the moment she’s started the GoFundMe page a few
weeks ago, she has raised about 50,000 dollars.
The decision of asking for financial help was hard to take for the family. They have several debts and they can't go back to their full-time jobs because of Archie's complex needs.
Despite the rising financial stress and having to take care of a disabled kid, Ms. Gould is optimistic about the future. Archie is her little miracle, he's happy and she has learned a lot from him in 10 months.
in you, baby Archie!
Based on materials: wnews.life