A young boy who suffers from a rare disease is turning to stone
For the last few months, many have been following the story of an 11-year-old boy who lives in a remote region of Nepal. His name is Ramesh Darji and he is different from other kids his age. Ramesh suffers from a very dire condition: he is slowly turning to stone.
When Ramesh was born everything looked normal and his parents were overjoyed. But within 15 days his mother, Nat Kumari, noticed that his skin was starting to peel off and thick scabs were forming all over his body. She and her husband took Ramesh to several different hospitals but the doctors had never seen anything like it and were unable to provide a diagnosis.
Finally the family found a doctor who was able to explain it to them. As it turned out, Ramesh suffers from a very rare condition known as ichthyosis, which causes the skin to grow seven times faster than normal. This leads to severe peeling and scabbing that can resemble scales. As the layers of scabbing multiply, the skin begins to look and feel like stone. The condition itself is incurable though there are treatments that can relieve the symptoms. Unfortunately, these treatments are costly and with a monthly income of only 7,000 Nepalese rupees a month (approximately $65), the family could not afford them.
Tragically, there was little they could do for Ramesh and his condition steadily worsened. By the age of five the thick skin on his legs made it impossible for him to walk and he lived in constant pain. With other children avoiding him because they were scared by his appearance, Ramesh lived a secluded life and only communicated with his parents when he was hungry or needed to go to the bathroom. His parents had no idea what to do. “It was even difficult for us to look at him,” admitted his mother.
But everything changed when, by coincidence, a reporter from the Kathmandu Post saw the young boy outside the family’s home while visiting the village. She made a video about Ramesh that became a hit on social media and caught the attention of the Nepalese singer Sanjay Shrestha. At the time, Sanjay was collaborating with British singer Joss Stone and he told her Ramesh’s story. Stone, who is well know for her humanitarian efforts, was moved to tears and immediately decided to offer Ramesh and his family help.
Ramesh is now receiving medical treatment at the University of Kathmandu and a GoFundMe campaign has helped to raise over $20,000 for his long-term care. Thanks to the efforts of his parents, some very dedicated medical professionals, and a humanitarian pop singer, Ramesh now has a much brighter future. Joss Stone even found time to visit Ramesh in the hospital. It’s not the first time the young singer has been there to help someone in need — Stone’s foundation has already helped to finance more than 200 charities throughout the world.
You can find out more about Ramesh in this video:
Ramesh and his family have been through a very difficult time, but their courage and perseverance is extraordinary. Ramesh may never have a normal life, but thanks to some generous and helpful people, he now has a chance of having a good one. And that chance is all that Ramesh and his family had ever hoped for.