 |
The Young Ramesh Kumari looked like a normal child when he was born, but about 15 days after he was brought home, his skin started to peel off. It was the symptoms of Ichthyosis.
Harlequin Ichthyosis is a skin condition that causes dry, dead skin cells to accumulate in patches on the surface of your skin. It's also known as "fish scale disease". Children affected with harlequin ichthyosis are covered with plates of thick skin that crack and split apart.
 |
Harlequin Ichthyosis is a skin condition that causes dry, dead skin cells to accumulate in patches on the surface of your skin. It's also known as "fish scale disease". Children affected with harlequin ichthyosis are covered with plates of thick skin that crack and split apart.
His peeling skin was replaced by thick black scales which were painful. This rare skin disease is turning the child into a 'stone'! Today, the child can neither walk or even talk.
 |
The disease is not curable yet.
Ramesh does not interact with children of his age as most of them are horrified looking at him. No child of his age plays or talks to him. Most children run away on seeing him.
Ramesh has a frozen body with limbs into twisted shapes. He neither interacts with his parents. He only talks when he is hungry or wants to go to the toilet. He remains silent or sit and cry and his parents do not know how to help their son.
But then help came from an unexpected source - British singer Joss Stone.
Ramesh's luck changed 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 Stone organise a concert.
Sanjay Shrestha said she was instantly touched by the story, and helped raise £1,375 during the concert for Ramesh's treatment through the Joss Stone Foundation.
Ramesh does not interact with children of his age as most of them are horrified looking at him. No child of his age plays or talks to him. Most children run away on seeing him.
Ramesh has a frozen body with limbs into twisted shapes. He neither interacts with his parents. He only talks when he is hungry or wants to go to the toilet. He remains silent or sit and cry and his parents do not know how to help their son.
 |
But then help came from an unexpected source - British singer Joss Stone.
Ramesh's luck changed 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 Stone organise a concert.
Sanjay Shrestha said she was instantly touched by the story, and helped raise £1,375 during the concert for Ramesh's treatment through the Joss Stone Foundation.
 |
What you should know about 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
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
 |
Sources: Cover Press Asia/YouTube
No comments:
Post a Comment