New battle for seven-year-old with ultra rare skin condition as row over blue badge erupts

Gulzeab Ahmed with her son Marni, who has rare skin condition Harlequin ichthyosis. Picture by Tony Johnson.

Gulzeab Ahmed with her son Marni, who has rare skin condition Harlequin ichthyosis. Picture by Tony Johnson.

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The constant threat of infection plagues the life of Armaan Ahmed, but that wont stop him having fun.

The energetic seven-year-old, who lives in Beeston, Leeds, has so far defied the doctors in overcoming deadly infections such as septicaemia, E. coli and MRSA during his short life.

As one of just 14 people in the UK with life-limiting skin disease Harlequin ichthyosis, Armaan, known to family and friends as Marni, faces a 24-hour battle with his fragile skin every single day.

Marni’s condition means he needs to be bathed twice-a-day, bandaged and covered in creams which must be reapplied every two hours, even at night, in a bid to stop the surface cracking and opening up to blood poisoning.

But the bright-eyed Beeston Primary School pupil’s family is now in the midst of a battle of a different kind, having had their lifeline blue badge taken from them after five years.

Marni’s mother and carer Gulzeab, who had to leave work to tend to the youngster, has failed in an appeal against Leeds City Council’s decision and formally complained that his complex needs are not being considered.

The 39-year-old said: “We just manage him and hope that one day there will be something to help him or a cure. As long as he’s happy and healthy, that’s all that matters. That’s why it’s important – I don’t have to risk his skin. Without a blue badge he could be at risk even more.”

Marni was born with thick, scaly skin covering his ears and had no eyelids until skin graft surgery when he was just six weeks old saved his senses. Almost three years in and out of Leeds hospitals followed.

The fragility of his skin, which grows 14-times faster than it should, means he spends much of his time indoors as the sun’s heat dehydrates and cracks its surface.

A dedicated teaching assistant tends to upbeat Marni’s many needs at school as he joins in with class but rarely gets the chance to go out to play with friends. Gulzeab said: “He loves school, he’s a happy child but he’s got no skin barrier so he’s prone to infection.”

Marni’s family were refused a renewal of their blue badge, which would allow them to park closer to services such as hospitals for free, in April 2014. After a failed appeal and subsequent complaint, despite supporting letters from doctors and consultants, council officers once again denied them a badge this month.

Gulzeab, who knows two families impacted by the condition that still have blue badges in Coventry and Oldham, added: “He’s a normal little boy with complex needs and they need to take those into consideration. The criteria should be different for children than it is for adults. He hasn’t grown out of his condition all of a sudden, so why is his treatment different to others?”

A council spokeswoman said the authority has “enormous sympathy” for Marni but can not issue a new blue badge because he does not fit the criteria.

She added: “Blue badges are designed to help people with mobility issues and the Department for Transport base eligibility on how far you are able to walk.”

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