Thursday, June 9, 2016

Meet 11-year-old boy Nar Kumari, with tragic skin condition that slowly turns him into STONE

15 days after Nar Kumari was born, his 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. 


Ramesh Darji suffers from Ichthyosis, an extremely rare condition which causes his skin to grow quickly and thickly - giving the appearance of having scales, or turning into stone


Suffering: Ramesh's skin first peeled off when he was just 15 days old, and was quickly replaced with thick, black skin which looked like scales, his father Nanda told MailOnline



Painful: As he got older, it simply got worse. At five, he complained to his parents of pain all over his body



Lonely: The 11-year-old has no friends, because the other children are too scared to come near

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.


Mystery: It seems even the doctors in the local area were unable to say exactly what was wrong with him 



Silence: Ramesh can barely talk, only letting his parents know when he is hungry or needs the bathroom


Trapped: The condition left him unable to walk by the age of six, and he was unable to go to school. As a result, he spent all day with his mother, Nar Kumari,  26, while his father went out to work as a labourer

His father 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.’



Support: They had almost given up hope, but then a Nepalese musician heard about his plight, and told Joss Stone - who was set to perform in Kathmandu in February - all about his condition



Fundraising: Sanjay Shrestha, who happened to be helping the Devon-born singer organise the gig, said she was instantly touched by the story, and helped raise £1,375 during the concert for Ramesh

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. 


Treatment: Ramesh has since been taken to the capital, where doctors are hopeful they can bring the incurable condition under control - and help him to walk once more



Help at last: His parents have been able to do nothing but watch him get worse over the years, until Joss Stone (pictured centre) heard about his plight and decided she could do something to help Ramesh and his family
His parents have been able to do nothing but watch him get worse over the years, until Joss Stone (pictured centre) heard about his plight and decided she could do something to help Ramesh and his family
Meet 11-year-old boy Nar Kumari, with tragic skin condition that slowly turns him into STONE

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