Click to play videoThiruvanathapuram (Kerala): Life is a struggle for four-year-old Ibrahim Badusha. He has defective sweat glands so his body can't regulate its own temperature. It's a rare disease called Anhidrotic Ectodermal Dysplasia (AED) where the sweat glands are deficient or sometimes just not there.
Says a pediatrician Dr Shajahan, "People suffering from AED feel very hot and need water to bathe all the time."
Ibrahim was diagnosed with AED when he was just a few months old and life for his family and him has changed dramatically since then. Ibrahim will need lifelong medication and care.
It's a constant struggle to keep his body temperature down. There's an additional tank of water kept outside the house just to keep him cool.
Says his mother, Fathima Rasak, "The child is a constant tension to us. He wants to take bath even in night and we cover him with wet clothes. We really are grief-stricken."
AED is a hereditary disease. Some of its symptoms are delayed or no tooth formation, thin skin, foul smelling nasal discharge along with abnormal nails and scanty hair.
There is no known cure for AED, so Ibrahim's family is pinning its hopes on Ayurveda. But his father, Abdul Rasak, finds it difficult to arrange the Rs 25,000 needed for each session of medication.
Says Rasak, "The English medicines failed, and we now go for Ayurveda, but we cannot afford the expenditure. Living in a rented house, I cannot afford this."
Ibrahim will turn five next year, but with no real medical help, his parents have little to look forward to.
(With inputs from Kundur Sathya Narayanan in Thrissur and Nafisa Islam in New Delhi)
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