Marni Ahmed

The Mail on Sunday - You - - You Interview -

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

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