Ramesh looked like any other bouncing baby boy when his mother Nar
Kumari held her little boy for the first time. 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.
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 his parents did discover the cause, an
extremely rare condition called Ichthyosis, they were unable to do
anything to ease their son's suffering.
We did not have enough money and had no choice than to keep Ramesh home and do our best.’
But then help came from 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.
He is now receiving treatment at the Kathmandu Medical College, where
doctors remain hopeful they may be able to make his life easier.
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