Ari Wibowo
sheds his skin like a snake every two days and must constantly smear his
body with moisturiser to stop it hardening and seizing up.
The
Indonesian teenager has a rare skin condition that doctors in Indonesia
have been unable or unwilling to treat and which has left him with an
extraordinary appearance.
He
suffers from Erythroderma, an inflammatory skin disease also known as
'red man syndrome', that causes the skin over almost the entire body to
become scaly and flake off.
Ari has shed
his skin every 41 hours since he was born 16 years ago. He must soak
his body in water every hour - night and day - and smear himself with
lotion every three hours to prevent drying out.
Photographer
Nurcholis Anhari Lubis, 35, has documented the little boy’s condition
as part of an essay project and describes the boy's skin condition as
‘scaly like a snake about to shed his skin’.
‘It’s
really sad because he was not born normally and has scaly skin all over
his body, similar to being severely burnt, from the sole of his feet up
to his head,’ Mr Lubis said.
‘If
the boy doesn't moisturise or soak his skin in water, his body would
shrivel and harden up like a sculpture and he won't be able to move,' Mr
Lubis said.
'If
he leaves it unattended for too long, he won’t be able to speak because
the wrinkles inside his mouth would go hard and it would dry out all
his blood in his body.'
Mr
Lubis said Ari's family were told by doctors at the hospital where he
was born that it did not have the resources to treat the condition, and
asked them to take the infant away.
He and his family now live by a routine of constant washing and dressing his skin with creams.
Still, the boy is trying to live a normal life in his village.
'He eats normal food like everyone else and his favourite snacks are instant noodles and crackers,' Mr Lubis said.
‘He
had trouble making friends when he was younger and would often go and
play with the other kids but most of the time, they would avoid him
because he is different to everyone else.'
Ari is taking lessons, but is forced to study alone because of ignorance about his condition in the community.
‘No
schools are willing to accept him because they fear his skin condition
would be contagious to teachers and other students,' Mr Lubis said.
Ari also suffers prejudice because of superstitions in his village.
Mr
Lubis said many people blame Ari's condition on a superstition that if a
woman mistreats animals while she is pregnant then it will affect her
unborn child.
Some people believe Ari's mother ‘tortured a lizard’ she found in the family home when she was pregnant with Ari.
‘I do not believe the myths but in Indonesia, there are still a lot of people who believe this,’ Mr Lubis said.
Jakarta-based Mr Lubis spent four days with the little boy and his family.
‘When
I approached Ari for a photo shoot, he looked very shy but didn’t feel
embarrassed and was happy to share his story,’ he said.
‘My
interests have been to document lives and the way humans live in their
own world, interacting with it and struggling to change it into their
own way.'
