Rare fungal disease turns 11-year-old's skin into thick scales

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A rare, lifelong condition has left one 11-year-old boy in Nepal covered in dark, scale-like skin and unable to  walk, go to school or make friends.

Fifteen days after he was born, Ramesh Darji’s skin began peeling off and the new skin grew back very thick, hardened and turned black, his mother, Nanda, told Express.co.uk. By his firth birthday, he was in so much pain that he was unable to walk.

“He is only able to inform us when he’s hungry or wants to use the toilet,” she said.

Ramesh was eventually diagnosed with icthyosis, a genetic skin disorder that affects more than 16,000 babies a year, according to the The Foundation for Ichthyosis & Related Skin Types, Inc (FIRST).  There is no cure of ichthyosis.

The family lives about three hours from Kathmandu and are unable to pay for medical care, but the boy’s story spread across the country and he was offered free medical treatment at the Kathmandu Medical College.

When he was admitted to the hospital, doctors had to remove the scales from his body, a painful process.

“But since his bones and muscles were not weak by birth we can try to work on them and with some physiotherapy I’m hopeful we can make him stand again,” Dr. Sabina Bhattri, an assistant dermatology professor at Kathmandu Medical College, told Express.co.uk.

Singer Joss Stone visited Ramesh and posted a video on Youtube in April, sharing that the boy’s condition had improved considerably. However, doctors noted that he runs the risk of the disease coming back with a vengeance.

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Through the Joss Stone Foundation, the British pop star is fundraising for Ramesh to continue to receive treatment as long as possible. A GoFundMe page has been set up, with a goal of $25,000.

“According to the doctors, it’s fixable. It just takes time; it takes money,” Stone said in the video.

In an update to the GoFundMe page posted on June 5, supporters were told that Ramesh’s doctors increased his vitamins and medicine in the hopes of getting him healthy enough to undergo surgery in a few months to help with his legs.