These young boys are as delicate as butterflies but tough as warriors

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Two young boys - one from Singapore and one from Canada - share a common skin disease that you have probably never heard of. Read their stories here...

We bring you the stories of two young boys living very far from each other, but who share a common skin disease that is as rare as it is excruciatingly painful.

And there is no cure for it either.

butterfly boy-1

Harshit with his parents

In Singapore

Harshit Talwar, age 10, can never join his friends in the playground. In school, according to a TODAY article, this young boy sits in a corner during recess and PE while his friends play.

He shares, “Sometimes I feel like crying inside when I see my friends having fun.” However, keeping Harshit away from rough-and-tumble childhood games is essential for his health.

This is because an accidental bump, minor tumble or scrape could make Harshit’s skin blister or “peel off like an onion, exposing the raw layer underneath”, said his father Navdeep Talwar.

Harshit also has no nails on his toes and fingers, and his fingers are fused together, making it very hard to even hold a pencil.

Jonathon being helped into school by his teachers aid

In Canada

14-year-old Jonathan Pitre will never fulfill his dream of being a hockey player. More than 90 per cent of his body—including his mouth and throat—is covered in blisters and wounds resembling third degree burns.

The Canadian boy cannot carry out every day movements like eating and climbing stairs without great pain, much less playing sports.

He struggles to stay awake throughout his three- to four-hour bath, assisted by his mother. Together, they carefully remove the gauzes and bandages all over his body, and afterwards redress his wounds. He is in agony even in his methadone induced sleep.

What is the condition that causes these children so much agony? Find out on the next page. 

Health Illnesses & Conditions Rashes & Skin Conditions