11-year-old Ramesh Darji suffers from a rare skin disorder, called Harlequin Ichthyosis which is slowly turning him into a stone statue.
The child suffers from Harlequin Ichthyosis, which is an extremely rare and severe genetic disorder, that causes the skin to grow seven times faster than normal.
His rare skin condition has left Ramesh unable to walk and even talk. Ramesh’s scaly appearance terrifies other children, leaving him isolated and with no friends.
Ramesh’s mother, Nar Kumari, 26, narrates that when he was born, he looked perfect like every other bouncing baby boy.
But just 15 days after his birth, her son’s skin began to peel and was replaced by thick, black scales which have been slowly and painfully hardening and entombing him since.
His desperate mother and her husband Nanda, 35, were left helpless to do anything but watch their son slowly turn to stone, as no hope for a cure was in sight for them.
The family lives in Baglung, a remote Nepalese region, and says doctors seemed bemused by what they told them was a ‘fungal infection’ and said they couldn’t help, while Ramesh was getting worse.
By his fifth birthday, Ramesh had begun to complain about experiencing pain and couldn’t even walk. By age six, the condition had left him unable to walk. His grave illness has confined him within the walls of their home, which is why he has never been to school.
Ramesh’s father is a poor labourer, who earns just 7,000 Nepalese Rupee (£44) a month. The family had a tough time trying to meet the child’s medical expenses.
Fortunately, a video about the little boy that was circulated on social media, was spotted by an acclaimed 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 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,
“He was in a really bad state when he was admitted. Thereafter, Ramesh was given antibiotics for a period of two weeks to prevent infections.”
Medicines and moisturizers were also applied on his body to remove the dead skin. Since the layers of skin have been removed he’s been able to speak better.
Doctors are hopeful that physiotherapy sessions will enable Ramesh to walk again as his bones and muscles are not weak by birth. Nanda who feels guilty at not being able to do something for her son sooner, says her only wish is to see him walk again.