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‘I hope that when I’m old, I’m the one that finds a cure’: Boy with rare skin condition wins award for outstanding courage

The bravery of a teenager who has battled to overcome a debilitating illness has been celebrated at a star-studded awards ceremony.

Fazeel Irfan, 15, of Pemdevon Road, Croydon suffers from a rare and painful condition called severe recessive dystrophic epidermolysis bullosa (EB).

Also known as Butterfly Skin because his skin is “as fragile as butterfly wings” as he puts it, Fazeel lives by the motto never give up and hopes that one day, he might discover a cure for his condition.

Fazeel said: “Any slightest touch or any sort of friction and my skin will tear and blister.

“Every single act I do in my life, I have to think about, whether it’s eating, sleeping, drinking – because my skin will somehow impact it.” His resilience was recognised at The Child of Britain Awards, the first national awards ceremony to celebrate the courage, fortitude, talents and triumphs of exceptional British children.

He won the Child of Courage award for the 13+ age group at the event, which was hosted by broadcaster Eamonn Holmes, at the Grosvenor House Hotel in Park Lane, central London.

Fazeel met Eamonn Holmes (left), dancer and celebrity Abbie Quinnen and Michelle German from sponsors St James’s Place Pictures: Younger Photography

Fazeel is often in extreme pain, as his joints are contracting and even the membranes in his mouth are fusing together. He has to go through between four and six hours of painful dressing changes every day and takes lots of medication to help him.

Despite struggling to walk, to use his hands fully or open his mouth easily, he continues to attend school every day at Greenshaw High School, in Grennell Road, Sutton, as well as attending karate every week.

He is an ambassador for the charity Debra, where he shares his story about living with EB to educate others as well as raising funds to support them.

He said: “When I’m older, I hope to do something as a doctor or in the scientist field, because I’m really interested in the human body. “I’m really, really hoping that a cure for my condition is found, but if it isn’t, I hope that when I’m old, I’m the one that finds a cure.

“Things do get hard and I usually end up crying. But I understand after I get through that, that I can’t give up and that this condition will end one day. Life is difficult, but you’ve got to plough on.”

Pictured top, Fazeel Irfan

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