11-year-old boy Ramesh Darji suffers from a rare skin disease, called Harlequin Ichthyosis, which is slowly turning him into a stone statue.
Harlequin Ichthyosis is a serious genetic disorder that causes the skin to grow more than seven times faster than normal. Ramesh, whose sickness has bestowed him with a scaly appearance which scares other children, stays alone and in isolation. This is because the poor guy has no friends. He, due to the disease, can barely talk or walk. He only lets his parents know when he is hungry or needs the bathroom.
Ramesh’s mother, Nar Kumari, 26, explains that when the little guy was born, he looked like every other bouncing baby boy.
But 15 days on, after his birth, her son’s skin started to fall off while a thicker skin with black scales appeared. The thicker skin has since been painfully hardening and entombing.
His heartbroken mother and father Nanda, 35, could do nothing but watch their son change into a stone since the disease can’t be cured.
Rameshi family based in Baglung, a remote Nepalese region says doctors appeared to have no solution to what they said was a ‘fungal infection’ while Ramesh condition worsens.
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By his fifth birthday, Ramesh confessed that he was experiencing pain and couldn’t even walk. By age six, he stopped walking. His condition has made him live his life within the confinement of their home.
Ramesh’s father is a poor labourer, pocketing only 7,000 Nepalese Rupee (£44) a month, and could not raise money for better treatment.
As luck would have it, a video about the little boy that went viral on social media drew the attention of a celebrated Nepalese singer Sanjay Shrestha, who was helping British singer Joss Stone, organise a concert.
The concert in Kathamandu raised £1,375 for his treatment through the Joss Stone Foundation, a charitable trust.
Ramesh Darji is currently receiving treatment at the Kathmandu Medical College where doctors at first removed the scales from his body. Dr Sabina Bhattrai, assistant dermatology professor, says.
Doctors have also removed the dead skin. So far, the layers of his skin have been removed and since then the child has been able to speak better.
Doctors are hopeful that physiotherapy sessions will help Ramesh walk again as his bones and muscles are still very strong to carry his weight. His parents say they hope that the boy will be able to use his legs again.