The boy with the 'sunburned' skin: Anguish of mother who gets accused by strangers in the street of not caring for son with rare condition
Eight-year-old Eren Gok spent the first year of his life in hospital
Has Netherton Syndrome, which affects just one in 200,000 people in UK
Doctors told his parents he wouldn't be able to walk or talk
Mother speaks of heartbreak after strangers called him 'disgusting'
Eight-year-old Eren Gok is forced to put up with cruel taunts and stares wherever he goes.
The little boy suffers from a life-threatening condition that makes his skin look sunburned all year round.
His condition appears so distressing that his parents are regularly accused by strangers of leaving him out in the sun to burn.
In fact,Eren, now eight, was born with Netherton Syndrome, a rare condition that affects just one in 200,000 births in the UK.
It leaves his skin permanently red, flaking and tight.
The youngster spent the first year of his life in hospital where he stopped breathing four times and battled MRSA.
Eren's parents, from Enfield, north London, were told he would never walk or talk, but he has now defied doctors by reaching all his milestones.
His mother, Arzu, 31, said: 'We get comments every day.
'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.
'People say horrible things. It does hurt.
'One day, I was in the supermarket and a man was shouting at me, asking me why I had burnt my baby. He kept shouting: "What kind of mother are you?"
'Eren's repeated some of the nasty things people say to him. It really upsets me.
'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 parents must bathe his skin twice a day with a medicated wash and use special creams to make sure it doesn't become infected.
But Eren is still at risk of infections, which can be life-threatening because they can cause heart failure.
His parents immediately knew he was different from the moment he was born.
His mother said: 'It was obvious. His skin was very tight and red. He looked almost plastic.
'His skin was peeling off.
'The doctors thought it might be eczema. They didn't really seem to know. We kept pushing for answers but they just discharged him.'
The worried couple decided to move from where they lived in Kent to London to try to get an appointment at Great Ormond Street Hospital in London.
It was there specialists broke the news their son had Netherton's Syndrome.
Eren, who had become seriously ill, was placed in a medically induced coma while medics battled to keep him alive.
Mrs Gok said: 'I couldn't sleep. I always had this fear something might happen to my baby. I didn't feel like a mum. I couldn't cuddle him or pick him up.
'They had to put a tube in his nose so they could feed him. He was losing weight fast.
'He was a on life support machine and stopped breathing many times.'
Medics also used special creams to try to soften his skin and stop it becoming infected.
But he developed the superbug MRSA and his parents were warned he was so poorly he was unlikely to survive.
Mrs Gok said: 'A nurse said he'd been in intensive care too many times. I broke down.
'I wasn't feeling well so I went outside to get some fresh air and when I came back I realised Eren had pulled his mask off and was breathing fine. No one could believe it.'
The couple were finally allowed to take him home a month before his first birthday but they found it difficult to cope.
His mother added: 'He was like a newborn baby. He couldn't crawl or walk. He couldn't even sit up.
'His clothes had to be thrown away after he'd worn them because of the risk of infection. We had to keep buying new ones.
'Taking care of him was very difficult. He was in so much pain he cried for hours.
'He'd scream if you tried to put him in the bath.'
For the first few years of his life, Eren made little progress but with the help and encouragement from his family, he started interacting with them.
'I'd put a DVD on for him and I could hear him laughing,' said Mrs Gok. 'Then I saw his hands and feet were moving. It was a magical moment.
Eren said his first word when he was five. 'He was playing with his cousin, Uman, and he just turned to her then said 'sister,' which was him showing him how much he loves her.
'It was such a shock. We thought we'd never hear him speak.'
Eren needs regular injections of immunoglobulin to treat his skin when it gets infected.
He is also unable to go out if it's too cold because his skin will crack and he can't go out in the sun.
But despite this, Eren doesn't let his skin condition get in the way and loves going to school.
'He loves watching films and is obsessed with Spiderman. He's really cheeky and makes us smile every day,' said his mother.
'He knows his skin is different. He says: "Why is my skin like this?"
'He draws pictures of himself and colours himself in red so he is aware.
'It doesn't seem to bother him too much though. I still worry about how he'll cope when he's older.
'When he was first diagnosed, I didn't know it was going to be with him for life but now we've accepted it. I just wish other people would do the same and stop staring.
'I really want to get across that people with Netherton's are not dirty. They wash twice a day.
'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.'
WHAT IS NETHERTON SYNDROME?
Netherton Syndrome is caused by damage in a gene called SPINK5, which controls the formation of a protein found in the skin. An lack of this protein results in flaking, red, dry and itchy skin.
The condition requires regular hospital check ups including appointments with a dermatologist and ear specialist (because of skin blocking the ears as it flakes).
The skin needs to be cared for several times a day using various mixtures of paraffin and Vaseline.
Infections to the skin and other body parts can quickly develop into life-threatening conditions because of the delicate nature of the skin.
There is still no treatment but efforts are being made to find a cure at Great Ormond Street Hospital.
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