Blue badge victory for family of brave Marni, 7, who has ultra rare skin disease

Gulzeab Ahmed with her son Marni Ahmed who has Harlequin ichthyosis. Picture by Tony Johnson.

Gulzeab Ahmed with her son Marni Ahmed who has Harlequin ichthyosis. Picture by Tony Johnson.

0
Have your say

Leeds City Council has done a U-turn over its decision not to renew a blue badge for the family of a youngster who is fighting a rare life-limiting skin disease.

Armaan Ahmed, 7, from Beeston, is one of just 14 people in the UK with Harlequin ichthyosis, which causes his fragile skin to crack meaning he needs 24-hour care to protect him against deadly infections.

Marni as a toddler.

Marni as a toddler.

The brave youngster, known to family as Marni, has so far defied the doctors in overcoming deadly infections including E. coli and MRSA. His condition means his skin is sensitive to heat and moisture, so he spends little time outside.

For four years a blue badge helped his parents park close for his constant hospital visits, before the local authority deemed that he no longer met the criteria in April 2014 based on how far Marni can walk.

The YEP revealed last month that Marni’s mum and carer Gulzeab’s fight to have the badge reinstated has led the family to go through two failed appeals.

The 39-year-old said: “The worst thing about it all was that I felt I had to prove what my son can and can’t do when they knew his diagnosis. I hope no-one else has to go through this. They were just treating him as a number and not an individual.”

“They were just treating him as a number and not an individual.”

She said she believes that the criteria for blue badges for children should change, children should not be asked to rate their pain – as Marni was – and assessments should be done on a case by case basis. Gulzeab added: “It will help make our lives a lot easier, we’re thankful for everyone’s support.”

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.

A council spokeswoman said it has reassessed the case with the help of new information, and so has granted the Ahmeds a new blue badge.

Gulzeab Ahmed with her son Marni. Picture by Tony Johnson.

Gulzeab Ahmed with her son Marni. Picture by Tony Johnson.

Professor Peter Moizer, Dean of Leeds University Business School

Leeds University Business School helps Yorkshire pupils to master Mandarin