When Nar Kumari held his child for the first time, he could not have been more perfect.
Smiling back at her, Ramesh looked like any other boy who jumped.
But just 15 days after she got it at home, her son’s skin began to peel and was replaced by thick black scales that have been slowly and painfully entombing him ever since.
His rare skin disorder is slowly turning him into a stone statue that has stolen his 11-year-old son’s ability to walk and even talk.
The scaly appearance of Ramesh terrifies other children, leaving him isolated and friendless.
And for a long time there seemed to be no hope for a cure, leaving her desperate mother and her husband Nanda impotent to do anything other than watch him slowly turn to stone.
Nanda said: “Her skin began to take off 15 days after her birth and then new skin began to grow very thick.
“It hardened and turned black, we had no idea what to do about it. No one helped us.
In fact, doctors in Baglung, the remote region of Nepal where the family lives, seemed confused by what they were told was a “fungal infection” and said they could not help.
All the time, Ramesh was getting worse.
“For this fifth birthday, he started saying that his body was hurt and he could not walk,” Nanda said. Neither could explain anything.
You can only tell us when you are hungry or want to go to the bathroom. He used to sit and cry, but we did not know what hurt him or how to help him.
Any child would see it and run away crying. It was difficult for him and for us.
By age six, the condition had left him unable to walk, so he had never been to school.
Even when Nanda, 35, and Nar, 26, discovered the cause, an extremely rare illness called Ichthyosis, they could not do anything to alleviate their child’s suffering.
Nanda is a worker who earns only Rs 7,000 (£ 44) a month, and is not enough to cover the cost of heavy medical bills.
He explained: “We took him to a few doctors in our district, but they told us that treatment was expensive and only available in private hospitals.
“We did not have enough money and we had no choice but to keep Ramesh at home and do our best.”
But then the help came from an unexpected source – British singer Joss Stone.
Ramesh’s fate changed when a video of him struggling was shared on social networks – and was discovered by the well-known Nepalese singer Sanjay Shrestha, who was helping Stone to organize a concert.
The Kathamandu concert grossed £ 1,375 for treatment through the Joss Stone Foundation.
But that was not enough for the Devon singer, and she met Ramesh the next day, spending almost two hours with the child, giving her presents, including stuffed toys and chocolates.
Nanda said: “We have never known how to help him.
“His mother spends all day with him, which makes it difficult for her to focus on our other children.
“She can not work either and she used to cry alone feeling bad for him.”
Ramesh is receiving treatment at the Kathmandu Medical College, where doctors remain hoping that they may be able to make their lives easier.
Dr. Sabina Bhattrai, assistant professor of dermatology, explained: “People with their condition suffer from dry, thick, scaly or scaly skin. In many cases, people have cracked skin that resembles scales on a fish.
It was very bad when he was admitted. We had to remove the scales from his body and it was painful.
“Over a period of two weeks we gave her antibiotics to prevent infections and apply drugs and moisturizer on her body to remove dead skin.”
But the delay in getting help has made his condition worse, he added.
“His inability to move is because he has been left too long,” said Dr. Bhattrai.
“But since their bones and muscles were not weak by birth, we can try to work with them and with some physiotherapy I hope we can get them back on their feet.”
We will do some x-rays and other tests and start the physiotherapy sessions.
There are already signs of improvement, which increases Nanda’s guilt at not being able to do something sooner.
“I am so grateful to Joss Stone for her initiative to help my son and I would never be able to thank her enough, she has done what no one else could do here, I owe my life to her.
Ramesh’s treatment will continue, said Sanjay, adding, “The money raised will now help the family stay in Kathmandu for treatment so they do not have to travel from one side of their village to another.”