- Ramesh Darji suffers from Ichthyosis which causes scales to grow on body
- His parents searched everywhere for a cure - but were told it was too costly
- Ramesh, 11, has not got any friends as his condition scares other children
- He has been given new hope by British singer, who is paying for treatment
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 son's suffering.
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.’
The concert in Kathamandu raised £1,375 for his treatment through the Joss Stone Foundation.
But that wasn't enough for the Devon singer, and she met with Ramesh the next day, spending nearly two hours with the little boy, giving him gifts, including cuddly toys and chocolates.
Sanjay said: ‘Joss was extremely moved by Ramesh’s plight. She got really emotional seeing him. She spent a long time playing and interacting with him. Ramesh was overjoyed by the presents.’
For his parents, the help has been a blessing - both for their son, and the wider family.
Nanda said: ‘We’ve never known how to help him.
'His mother spends the entire day with him, which makes it difficult for her to focus on our other kids.
'She cannot work either and she used to cry alone feeling bad for him.’
Ramesh is now receiving treatment at the Kathmandu Medical College, where doctors remain hopeful they may be able to make his life easier.
Dr Sabina Bhattrai, assistant dermatology professor, explained: ‘People with his condition suffer from dry, thick, scaly or flaky skin. In many cases, people have cracked skin which resemble the scales on a fish.
'He was in a really bad state 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 him antibiotics to avoid infections and applied drugs and moisturizer on his body to remove the dead skin.’
But the delay in getting help has made his condition all the worse, she added.
‘His inability to move is because he’s been left for too long,' Dr Bhattrai said.
'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.
'We will have some x-rays and other tests done and start physiotherapy sessions.’
Already, there are signs of improvement, which increases Nanda's guilt at not being able to do something sooner.
‘I feel really sad and helpless to have failed him. Since the layers of skin have been removed he’s even able to speak better. As parents we failed him. My only wish is to see him walk again now.
‘I am very 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 nobody else could do here. I owe my life to her.’
Ramesh’s treatment will be ongoing, Sanjay said, adding: ‘The money raised will now help the family stay in Kathmandu for treatment so that they do not have to travel back and forth to their village.'
- To donate, visit the Joss Stone Foundation's website.
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