8-year-old Eren Gok has lived all his life with Netherton syndrome, which causes his skin to be red and peel. His parents are regularly accused by strangers of leaving him out in the sun too long and letting his skin burn.
His mother Arzu, 31, said “The first time we took him out my husband Baykal was carrying him in his basket and three young guys came over. They called him a disgusting baby.” A man in a supermarket asked her why she had burned her baby, shouting, “What kind of mother are you?”
Netherton is caused by a gene mutation and characterized by chronic skin inflammation, stunted growth, and severe dehydration. Eren spent the first year of his life in the hospital fighting infection. On two occasions his breathing stopped.
There is no cure for Netherton Syndrome. Twice a day Eren must bathe in a medicated wash and use special creams to avoid infection. Because the risk of infection is so great, he has to make regular hospital check ups. He is unable to go in the sun and intense cold can crack his skin. He receives regular shots of immunogloben to treat skin infections.
When Eren was born, his parents knew immediately something was different, but doctors were at a loss to put there finger on the disease. “It was obvious. His skin was very tight and red. He looked almost plastic,” Arzu said. “His skin was peeling off.” Doctors suggested it was eczema and discharged him.
The family moved from their home in Kent to London in order to make Eren an appointment at Great Ormond Street Hospital where he was finally diagnosed. The boy was very ill and had to be placed in a medically induced coma. He contracted a staph infection, MRSA, which does not respond to traditional antibiotics. He was losing weight and fading fast. His mother broke down, “I wasn’t feeling well so I went outside to get some fresh air and when I came back I realized Eren had pulled his mask off and was breathing fine. No one could believe it,” she said.
Eren went home a month before his first birthday, but having spent all his time hospitalized, he did not know how to walk, crawl or sit up. Often in pain, his parents found it difficult to handle him. Because of the risk of infection, all of his clothing had to be thrown away after it was worn. He did not say his first word until he was 5.
While he has told his mother some of the cruel things people say to him, Eren enjoys going to school and playing with other children his age. Spending a lot of time indoors, he loves to watch movies, especially Spiderman.
“For a long time, I didn't go outside and tried to keep him under cover. But I finally see things more positively. I don't see his skin condition now. I see my cheeky, happy son.” His mother said, “I’m just so glad he’s here with us. Most children with this syndrome don’t live. Eren is one of the lucky ones.”