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Leeds tot's rare skin torment
His rare skin condition could have killed him – but Armaan Ahmed has defied all predictions.
The two-and-a-half-year-old is one of only 11 children in the country with Harlequin ichthyosis.
He was born with thick, scaly skin which covered his ears and had no eyelids.
In hospital, staff nicknamed him Prince because he slept on silk sheets to protect his skin.
Despite fears he may not see or hear, Armaan – known as Marni – is an active and bright little boy.
But he needs round-the-clock treatment.
Dad Zaheer said: "When he was born doctors explained that babies usually only survive a couple of hours to a couple of days. Luckily he has fought through everything."
Mum Gulzeab added: "Marni is a delight and we are so happy to have him in our lives."
Mr Ahmed said when Marni was born at 34 weeks "his skin was scaly and cracked into pieces that are shaped like Harlequins."
At six weeks he became the youngest patient to undergo surgery to create eyelids with a skin graft.
He spent most of the first 15 months of his life in hospital because of frequent infections.
Now he is cared for at home by his parents unless he becomes very ill.
They bath him twice a day, bandage him and cover him with cream which must be reapplied every two hours, even at night.
Mr Ahmed said: "It's a manageable process though it will never go away unless they find a cure.
"We take every day as it comes. Infection could take him away."
The oldest sufferer in the UK is 26-year old Nusrit Shaheen from Coventry.
Mr and Mrs Ahmed, who also have a daughter Aleena, 12, and a son Zayyan, 10, are urging support for Jeans for Genes Day as money raised will help the Ichthyosis Support Group.
The family, from Beeston, Leeds, also want to raise awareness of the condition.
"The first time I took him out people just stared," Mrs Ahmed said.
"People ask if he's adopted or been burnt.
"I don't want people feeling sorry for us. I just want them to understand it's something we are dealing with."
Support has come from family, friends, doctors, nurses, care team including their respite carers and pharmacy.
Mrs Ahmed especially thanked consultants Philip Chetcuti and Sheila Clarke and their dermatology specialist nurse Jo Teasdale.
On Jeans for Genes Day next Friday people are invited to wear jeans in return for a donation. Sign up at www.jeansforgenes day.com.
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Friday 25 May 2012
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