Galaxy

10 Jun 2016

Stone boy: Young boy suffering from Ichthyosis, a devastating skin condition that freezes the body

An 11-year-old boy suffering from a rare condition which is slowly turning him to STONE has been helped by a surprising Good Samaritan.
Young Ramesh Kumari has a rare and debilitating condition which means hard, flaky scales cover his body and make daily life almost impossible.
Ramesh, from Baglung, Nepal, started displaying symptoms of Ichthyosis at just a few weeks old.
Now, he has been left unable to walk or speak due to the extremely rare condition which has frozen his body and limbs into twisted shapes.
The young boy's dad Nanda explained how other children run away from him as his appearance scares them.
His mum Nar isn't able to work as she spends all day caring for him and said he is only able to communicate when he wants the toilet or needs feeding.
 Nanda said : "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.
"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."
Ichthyosis is a long-term condition that results in hard 'fish scales' forming on the skin and is caused by a faulty gene passed down from parents.
There is no cure for the disease but it can be managed by daily skincare and other medications.
Ramesh's family were unable to afford medical care on Nanda's 7,000 rupees (£44) a month salary.
But he has found fresh hope thanks to help from Brit singer Joss Stone, who has raised much-needed funds for his medical treatment.
He's now receiving treatment at Kathmandu Medical Centre, where things are looking up for the youngster.

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