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, 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 potential 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.
He loves school, he’s a happy child but he’s got no skin barrier so he’s prone to infection.
The 39-year-old told the YEP: “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.
Now in the company of his siblings Zayyan, 15, and Aleena, 17, the energetic youngster is used to living with a condition that means his skin grows 14-times faster than it should.
The fragility of his skin means he spends much of his time indoors as the sun’s heat dehydrates and cracks its surface, which has led his family to have a special extension and covered outdoor room built.
A dedicated teaching assistant tends to Marni’s many needs at school as he joins in with class but rarely gets the chance to go outside to play with his friends.
“He loves school, he’s a happy child but he’s got no skin barrier so he’s prone to infection,” Gulzeab said. “He’s independent but I need to make sure that he’s okay – he’s very vulnerable to everything.”
While wearing an armoury of skin protecting tights, bandages and bandannas, he fills in his spelling homework, shades within the lines of his colouring book and rolls a football around the living room of his Beeston home with a smile on his face.
Marni’s naturally positive attitude comes despite years of constant hospital visits to maintain his sight and hearing as the medication that keeps him healthy takes its toll on his teeth and organs.
That in turn means more check-ups and more journeys to and from Leeds General Infirmary, in which Gulzeab and Marni’s dad Zaheer face balancing his skin’s exposure to the outdoors with the cost and distance of parking nearby. All the while everywhere the youngster goes his carers need to be armed with cream and bandages to protect him.
“Everything I carry for him is a lifeline – his creams and medicine are like insulin to a diabetic, We have got enough to deal without this problem,” Gulzeab said.
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. Following a failed appeal and subsequent complaint, despite supporting letters from doctors and consultants, council officers once again denied them a blue 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 explained that it has “enormous sympathy” for Marni but can not issue a blue badge because he does not fit the criteria. She said: “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.”
The spokeswoman added that the authority has done mobility test on Marni but would happily reassess him.
LESS THAN 100 PEOPLE ARE AFFECTED
Harlequin ichthyosis is a rare condition that is believed to affect less than 100 people worldwide.
The condition is a severe genetic disorder that mainly affects the skin.
There are approximately five children born with the condition in the UK each year, of which some may be stillborn.
The oldest person with the Harlequin ichthyosis in the UK is Nusrit Shaheen, who is just 30 years of age.