When Nar Kumari held her little boy for the first time, he couldn’t have been more perfect.
Smiling back at her, Ramesh looked like any other bouncing baby boy.
But just 15 days after she got him home, her son’s skin began to peel and was replaced by thick, black scales which have been slowly and painfully
entombing him since.
His rare skin disorder is slowly turning him into a stone statue has robbed the 11-year-old of his ability to walk and even talk.
Ramesh’s scaly appearance meanwhile terrifies other children, leaving him isolated and with no friends.
And for a long time it seemed there was no hope for a cure, leaving his desperate mother and her husband Nanda helpless to do anything besides watch
him slowly turn to stone.
Nanda told MailOnline: ‘His skin started peeling off 15 days after he was born 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 Nepalese region where the family live, seemed bemused by what they told them was a ‘fungal infection’ and said
they couldn’t help.
All the while, Ramesh was getting worse.
‘By this fifth birthday he began to say his body was in pain and he couldn’t walk,’ said Nanda. ‘He’s never really been able to explain anything to us either.
‘He is only able to inform us when he’s hungry or wants to use the toilet. He used to sit and cry but we didn’t know what was hurting him or how to help him.
‘Any young child would see him and run away crying. It was hard for him and us to watch.’
By age six, the condition had left him unable to walk, and so he has never been to school.
Even when Nanda, 35, and Nar, 26, did discover the cause, an extremely rare condition called Ichthyosis, they were unable to do anything to ease their
Nanda is a labourer who earns just 7,000 Nepalese Rupee (£44) a month, and it is not enough to cover the cost of the hefty medical bills.
He explained: ‘We took him to a few doctors in our district but we were told that treatment was costly and only available in private hospitals.
‘We did not have enough money and had no choice than to keep Ramesh home and do our best.’
But then help came from an unexpected source – British singer Joss Stone.
Ramesh’s luck changed when a video of him struggling was shared on social media – and it was spotted by the acclaimed Nepalese singer Sanjay
Shrestha, who happened to be helping Stone organise a concert.
‘I got an email from Joss’ team saying they wanted to perform here and said they wanted to support a local charity.
‘In the meantime, I saw a video on social media about this poor boy so I sent them the link and she immediately decided to help him.’
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