Marni Ahmed

Like many other ten-year-old boys, Marni enjoys watching American wrestling, playing Pokémon games and listening to hip -hop. But his life is far from normal.

From birth, Marni has been fighting harlequin ichthyosis, a rare, life-threatening condition that makes his skin red raw and cracked. He has to have cream applied at two-hourly intervals; even at night, his skin is moisturised every four hours and his exposed face and hands need applications several times an hour.

‘Marni is funny and cheeky and just wants to be like any other kid, but it has been hard for some to see beyond his appearance,’ says his mother Gulzeab. All that changed, however, when Marni won a WellChild Award and attended the star-studded awards ceremony in London last October. ‘Now everyone knows about me and I don’t get comments,’ he says. Gulzeab adds: ‘The award is the best thing that has happened to Marni. He tells people now that he’s cool and brave – and that is exactly what he is.’

Marni lives in Leeds with Gulzeab, 42, a former nursery nurse, dad Zaheer, a 44-year-old marketing manager, sister Aleena, 20, and brother Zayyan, 18. When he was born prematurely after a difficult pregnancy, it was evident from his torn and bleeding skin that he was seriously ill. ‘The skin was so tight across his chest, he couldn’t breathe properly,’ Gulzeab says.

Harlequin ichthyosis is caused by a genetic defect – if both parents are carriers, their children have a one-in-four chance of having the condition. It’s extremely rare – affecting around five children born in the UK every year – and is so called because the skin forms diamond-shaped thickened plates.

At six weeks, Marni had plastic surgery on his cracked eyelids. Since then he has had countless hospital admissions – for surgery and to help