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Rare condition 'turning boy into stone'

by Staff reporter
12 Jun 2016 at 18:18hrs | Views
Ramesh Kumari - ©Cover Asia press / Laxmi Prasad Ngakhusi
An 11-year-old boy from Nepal has skin that is 'turning to stone' due to a rare and devastating genetic condition.

UK singer Joss Stone has stepped in to help Ramesh Kumari in his battle against an illness which is imprisoning him within his own body.

The star raised £1,375 to pay for the youngster's treatment, which is too expensive for his parents to afford.

Kumari has spent most of his life struggling against the condition, which is called Harlequin Ichthyosis.

Nanda, his father, 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."

Ramesh's condition means that his skin hardens and becomes scaly, effectively "entombing" him and making it very difficult to move around easily.

The youngster finds it hard to make friends, because other children are often scared of him and run away.

Joss Stone was moved to action after watching a video about Ramesh's struggle.

"By his fifth birthday he began to say his body was in pain and he couldn't walk," Nanda added. '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."

Nanda earns just 7,000 Nepalese Rupee (£44) a day, making it impossible for him to pay for his son's treatment, until the Joss Stone Foundation decided to help.

The singer's charity raised £1,375 by holding a concert in Kathamandu.

She also visited Ramesh in person and showered him with presents.

He's now receiving treatment at Kathmandu Medical College,

Dr Sabina Bhattrai, assistant dermatology professor, said: "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."

Although Ramesh's bones have been weakened due to years of being unable to move properly, he is undergoing physiotherapy and doctors hope he will soon be able to walk again.

Source - MailOnline / Sun

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