Story By: Feza Uzay, Sub-Editor: Marija Stojkoska, Agency:  Newsflash

This miracle child dubbed ‘Snake Baby’ due to an incredibly rare disease that makes his skin scaly, has just celebrated his first birthday, allegedly becoming only one of two born with the condition last year to survive.

Gokdeniz Tuncer, who was born in the district of Esme in the Turkish province of Usak on 25th January 2021, was referred to Izmir Behcet Uz Children’s Hospital a day later because doctors believed he was suffering from a rare skin disorder.

He was incubated, and diagnosed with Harlequin ichthyosis two months later, following numerous examinations.

Harlequin ichthyosis is a rare, hereditary skin disorder and is one of the most severe forms of ichthyosis, a disease characterised by rough, thick, and scaly skin.

Harlequin ichthyosis is often fatal in newborns, but some born with the disease can survive and go on to live a full life.

The disease got its moniker Harlequin because the faces of newborns who have the disorder are said to resemble the comedic Italian pantomime character.

Gokdeniz was subsequently dumped ‘Snake Baby’ because his skin forms large, diamond-shaped plates that are separated by deep cracks.

His mother Ela Tuncer said the youngster was at risk of infection, adding: “We know the disease is a rare, incurable and fatal disease that is seen in one in 300 million.

“He needs to be looked after in a sterile environment. I was able to see my son for the first time two months after he was born. When he was four months old, I could only kiss him once under the supervision of a doctor. We are not allowed to kiss him or touch him with bare hands.”

She added: “When my son was diagnosed, I did some research on the disease. I learned that a total of five children were born with this disease in 2021. Unfortunately, three of them became angels. Together with Gokdeniz, another baby is trying to hold on to life.”

Ela said she had a hard time when she learned that her son’s body had to be constantly cleaned and that the dead skin needed to be peeled off.

She said: “We bathe him with oily water for an hour every day. Then we apply a cream to his body and remove the dead skin. We also have to apply a cream to his body every hour. We look after him in turns together with my mother. We go through a kilogramme of vaseline and two pots of cream every day.”

Ela said that the entire process is very tough, adding: “We are already struggling with a difficult disease, and it makes me very sad as a mother that my child is excluded from society. I definitely want to raise awareness on this issue. People do not know about the disease, and there is no cure.

“I also think the families of children with the disease should be given psychological support. If there had been awareness about the disease, I might not have felt so helpless.”