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
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.
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.’
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.
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

No comments:
Post a Comment