Sayali, 13, and Siddhant, 11, have been segregated at school and branded witches and ghosts by locals frightened by their appearance.
Their parents apply moisture three times a day while drugs offer only slight relief. The children’s bones are weakening and their sight is deteriorating. There is no cure.
Yet the emotional suffering is often as difficult to bear as the physical pain. Continue...
Sayali said: “I’m disgusted when I see myself in the mirror. I wonder why God made my brother and me this way. I aspire to be an accountant but I wonder if anyone would offer me a job with this condition.”
A mutated gene carried by both mother Sarika and father Santosh left the children with crippling Lamellar Ichthyosis.
They were born covered in a syrup-like membrane that sheds to leave scaling beneath. Yet the parents and their third child, daughter Manasvi, nine months, are unaffected.
Sayali and Siddhant live as outcasts in the village of Pune, in Maharashtra, central India.
Santosh, who works in a car parts factory, said: “People assume it’s contagious and they will catch the disease. Children often run away from them. But I refuse to keep them at home liked caged animals.
I take them everywhere so they can get used to it and learn to cope with people’s attitudes. My only dream is to see them cured.”
Sarika added: “They are normal human beings and should be treated the same. Every child should live a normal life.”