A young boy with a rare skin condition that has turned his skin to stone has received life changing help from British singer Joss Stone.
Ramesh Darji, 11, from Balgung, in Nepal, suffers from the rare condition Ichthyosis which has left his skin hard and crusty.
But due to the remote location of his village up in the Himalayas his parents have not been able to treat him and he has been left to suffer all his life.
Ramesh’s father Nanda Bahadur Darji, 35, a labourer who earns Rs 7,000 Nepalese Rupee a month (£44), said: ‘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 when Joss Stone heard about his plight when she was due to perform in Kathmandu in February she decided to step in.
Sanjay Shrestha, 38, a famous musician in Nepal, who helped Joss Stone arrange her gig, said: ‘I got an email from Joss’ team saying they wanted to perform here and said they wanted to support a local charity. In the mean time, I saw a video on social media about this poor boy so I sent them the link and she immediately decided to help him.’
Joss’ concert was on February 18, at the Hyatt Regency Hotel in Kathmandu, and had an audience of 500 people. It raised over $2000 USD towards Ramesh’s treatment through her Joss Stone Foundation.
We did not have enough money and had no choice than to keep Ramesh home and do our best
The next day she met with Ramesh and his family before leaving for her next gig in Bangladesh. She spent nearly two hours with him and took him gifts that included a toy car, a ball, chocolates and cuddly toys.
Sanjay said: ‘Joss was extremely moved by Ramesh’s plight. She got really emotional seeing him. She spent a long time playing and interacting with him. Ramesh was overjoyed by the presents.’
Ramesh was born with a rare disorder called Ichthyosis, which is where skin reproduces very quickly, creating thick layers and becomes very dry, hard, scaly or flaky.
But due to Nanda’s poor finances and living in a very rural part of Nepal, the family had no one to turn to and Ramesh’s skin worsened as the years passed.
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.
‘By this fifth birthday he began to say his body was in pain and he couldn’t walk. 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.’
Whenever Nanda took him out of their house, children would cry as soon as they saw him. ‘Any young child would see him and run away crying,’ he added. ‘It was hard for him and us to watch.’
He used to sit and cry but we didn’t know what was hurting him or how to help him
Nanda and his wife Nar Kumari, 26, have three other children but are all normal.
Ramesh has never been to school and he hasn’t walked since he turned six-years-old. He lived a very secluded and lonely life playing with the few toys that he has.
Nanda added: ‘We’ve never known how to help him. His mother spends the entire day with him, which makes it difficult for her to focus on our other kids. She cannot work either and she used to cry alone feeling bad for him.’
But thanks to money raised at Joss’ concert the family were eventually flown to Kathmandu, and admitted to the Kathmandu Medical College.
Even though there is no cure for Ramesh’s condition, doctors at the hospital are hopeful of making Ramesh a lot more comfortable in life.
Dr Sabina Bhattrai, assistant dermatology professor at Kathmandu Medical College, said: ‘People with his condition suffer from dry, thick, scaly or flaky skin. In many cases, people have cracked skin which resemble the scales on a fish. 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.’
Dr Bhattrai explained Ramesh’s condition is a genetic disorder but due to the lack of activity in his life his bones and muscles turned weak.
‘His inability to move is because he’s been left for too long. But since his bones and muscles were not weak by birth we can try to work on them and with some physiotherapy I’m hopeful we can make him stand again. We will have some x-rays and other tests done and start physiotherapy sessions.’
Nanda said: ‘I feel really sad and helpless to have failed him. Since the layers of skin have been removed he’s even able to speak better. As parents we failed him. My only wish is to see him walk again now.
‘I am very grateful to Joss Stone for her initiative to help my son and I would never be able to thank her enough. She has done what nobody else could do here. I owe my life to her.’
Ramesh’s treatment will be ongoing.
Sanjay said: ‘The money raised will now help the family stay in Kathmandu for treatment so that they do not have to travel back and forth to their village. Joss has been collecting more funds for Ramesh through her Joss Stone Foundation.’