Though he was born in perfect condition, just 15 days after his birth Ramesh Kumari’s skin began to peel and was replaced by thick black scales which have been slowly and painfully turning him into a statue since.
His extremely rare skin disorder (Ichthyosis) has robbed the 11-year-old of his ability to walk and even talk.
“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 his 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. 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,” Nanda, his father told MailOnline.
When they eventually found out what was wrong with their son, Nanda was told the treatment was too expensive to cover with his £44 a month wage, and so they could do nothing but watch him suffer. ‘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,’ he said.
Just when they had given up hope, Ramesh got help 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 British singer, Joss 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.
Ramesh is now receiving treatment at the Kathmandu Medical College, where doctors remain hopeful they may be able to make his life easier.
Dr Sabina Bhattrai, assistant dermatology professor, explained: “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. But the delay in getting help has made his condition all the worse, she added. 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.
Already, there are signs of improvement, which increases Nanda’s guilt at not being able to do something sooner. “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.
WHAT IS HARLEQUIN ICHTHYOSIS?
Harlequin Ichthyosis is extremely rare, and comes out of the blue.
The parents of an affected baby are carriers and will have a one in four risk of any baby being affected.
The condition causes the skin to grow seven times faster than normal.
The skin appears tight, with thick plates of hard scales resembling armour plating or the harlequin suit of a jester.
The skin splits at several areas causing deep cracks. And a sufferer’s face looks stretched with turned out lips and eyelids, and the ears, hands and feet may be hidden by scales.
The extra skin needs to be removed constantly and ointment is also applied four or five times-a-day.
Children who survive will need ongoing intensive skin treatment with creams and courses of retinoid medicine and many require physiotherapy and counselling.
Source: The Ichthyosis Support Group