This 11-year-old boy is turning into stone due to a rare skin condition, even suffers unbearable pain
Sometimes people are struck with such bad luck that, it makes their lives a living hell. Here is a story of a boy who suffers from such rare and incurable disease that he had to wait some time so that some doctor could diagnose it properly. Even after the disease got diagnosed, his parents couldn’t afford the treatment and then social media came to help and he got some serious financial help from a very unexpected source.
Find out what happened to him and how he got help.
1 The initial problems
This boy is 11-year-old Ramesh Darji, who lives in Kathmandu, Nepal and suffers from a rare disease which is turning his skin slowly into stone like roughness. He was just 15 days old when his skin from his whole body started to peel off slowly. This skin was then replaced by scale like texture which was black in color. When he was taken to the nearby doctors in his village of Baglung, the doctors dismissed it as a form of fungal infection and said that they couldn’t help anymore. The boy was constantly complaining and crying of pain and itching all over his body and by the time he was five, he couldn’t walk and his communication was limited to asking for food and to be lifted to the toilet to use it.
2 Diagnosis of the problem and treatment
Ultimately, doctors at a bigger hospital were able to diagnose the condition as Ichthyosis or Harlequin Ichthyosis. Only one in four babies are at the risk of contracting this extremely rare disease and often one of the parents are carriers. This condition causes the skin to grow at seven times faster than the normal rate. This leads to skin becoming solid and growing in plates, which resemble scales. Also the skin breaks at numerous places and cracks. There is no known cure for the condition and it can only be treated by applying ointment on the body.
3 Help arrives from an unexpected source
Someone decided to make a video of Ramesh and his sufferings from this Ichthyosis disease and put it on the social media. The video quickly went viral and it was viewed by acclaimed Nepali singer Sanjay Shrestha, who shared the video with British singer Joss Stone, who was in Nepal for 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” said Shrestha.
The concert raised 1375 pounds for Ramesh’s treatment via the Joss Stone foundation and even the singer met the boy the next day. He was shifted to the Kathmandu medical college where a team of doctors are treating him. He was given a course of antibiotics to help fight various infections and remove the dead skin using tools and creams. But he has seemed to lose his ability to walk, since his muscles have atrophied due to non-movement for so many years and he is undergoing treatment for the same.
However doctors have showed hope that they will be able to help Ramesh lead a much comfortable life from now on.