FOR most children, a bump or scrape is a normal part of everyday life. But for Hugo Tornqvist, it can trigger a sequence of events that could kill him.  The two-year-old was born with a rare genetic disorder that causes his skin to be very fragile and blister easily, at the slightest bump.

Called Junctional Herlitz Epidermolysis Bullosa, it is so serious that doctors wanted he wouldn’t live to be more than eight months old. But Hugo, who lives just outside Karlskrona in Sweden with his mother Hanna and her partner Magnus, has defied the odds and is still fighting on.  The only exterior sign of Hugo’s condition is his extremely sensitive skin, with the slightest bump causing it to peel off. His entire body, both inside and out, is covered in sores and blisters. The condition also has other unforeseen and serious implications, including respiratory problems that can cause Hugo’s airways to close suddenly and without warning.

Last summer he had to be hospitalised due to severe breathing problems and on another occasion his eyes were totally swollen shut for three weeks. But his body has battled back each time and, while at one point 70 per cent of his body was covered in blisters, today this is closer to 15 per cent.  Hugo has also developed at a normal pace despite his poor immune system and the fact he has to be fed through a tube in his belly button due to scarring of the pharynx. The family live in a specially adapted house where everything, including the floor of Hugo’s bedroom, is carefully padded to avoid damage to his skin.  Meanwhile, he is not allowed to interact with children his own age and Hanna’s other two children can only stay every other weekend to limit his exposure to childhood illnesses.                                 –MOL