Sasha was born without any eyes. He is one of just three infants born with this unusual disease in the entire globe. Bute is the lone Russian from Tomsk. Sasha’s mother worried she would be unable to provide for her son’s medical treatment. As a result, she abandoned him to an orphanage. “He is no different than other children, he plays and grins just like any healthy baby,” one nurse who cared for him as a six-month-old stated. He enjoys both playing and swimming. He’s a pretty happy little guy.”
Sasha was born with SOX2 anophthalmia syndrome, as were the other two kids. It is frequently accompanied by a slew of major health issues. Sasha had two benign cysts on his forehead, but they were removed and he is now healthy. Sasha, on the other hand, will not be able to see anything. Doctors placed small orbs into his eye sockets to prevent his face from deforming due to the lack of eyeballs. He’ll require procedures every six months to raise the orb size to accommodate his development due to his young age.
Regardless, Sasha has won the hearts of everyone he meets. The orphanage’s staff became desperate to find him a loving home. He’s a “calm, smiling baby” who “smiles back as soon as he hears familiar voices,” according to his parents.
“Sasha is going through all of his normal checks and testing like any other infant his age,” said doctor Tatiana Rudnikovich. He’s doing OK.”
Sasha was adopted by parents from another Russian city in November 2020. “Of course, we are really thrilled for baby Sasha and wishing him and his parents all the best,” one of the ladies who cared for him stated, speaking for all of us.
Another case of SOX2 Anophthalmia Syndrome has been discovered.
Archie Innes, an Australian baby born without eyes, is one of the others. He also has hearing loss, significant gross motor delay, a number of brain abnormalities, and mild aspiration, which is when fluids enter his lungs.
Fiona, Archie’s mother, has remarked about how these circumstances influenced Archie’s growth. “He was born black blind, so he has no spatial awareness,” she explained. “Even the most fundamental movements are difficult to teach him.”
When Fiona was 28 weeks pregnant, she and her husband Stevie learnt of her baby’s illness. “Our lives were permanently changed on that day,” she stated.
Archie, unlike Sasha, gets his meals and fluids through a tube. He spent the first part of his life in the hospital. Despite his developmental limitations, Fiona described him as a “smiley baby” who enjoyed to explore his surroundings. In the meanwhile, he trains with a guiding dog for mobility and awareness. He also enjoys playing with his musical toys. “Right now, we want him to get as much treatment as possible – he needs a lot of exposure to develop social awareness and independence,” Fiona explained.
Despite the difficulties, his family stays upbeat and supportive of other families in similar situations. “It’s simply a different path,” she explained, “but it’s an interesting one.” “We’re incredibly fortunate, and [Archie] is teaching us a lot.” We are now living life to the fullest – something we previously took for granted.”
“All I want for Archie is for him to be happy.” I hope that one day he will be able to acquire a degree of independence that will allow him to interact with the rest of the world. I want him to know love and companionship, as well as to realize his full potential, whatever that is.”