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* WARNING: GRAPHIC CONTENT * HASSAN SUFFERED THE DEBILATATING GENETIC CONDITION KNOWN AS 'BUTTERFLY DISEASE' * HE HAD LOST 80% OF HIS SKIN AND WAS NEAR DEATH AND WAS IN A DRUG
INDUCED COMA * DOCTORS GREW HIM A NEW SKIN IN A LABORATORY AHEAD OF THE PIONEERING OPERATION * IT FEATURED STEM CELLS GENETICALLY ALTERED TO ELIMINATE THE FLAW IN HASSAN'S GENES By
COLIN FERNANDEZ SCIENCE CORRESPONDENT FOR THE DAILY MAIL Published: 13:01 EDT, 8 November 2017 | Updated: 06:04 EDT, 9 November 2017 In an induced coma after losing 80 per cent of his skin
to a rare genetic condition, seven-year-old Hassan was close to death. But now doctors have saved him after growing an almost completely new skin for him in the laboratory. Hassan, whose
family’s full name has not been released, suffered from ‘butterfly disease’, which makes human skin as delicate as the insect’s wings and likely to blister and peel off at the slightest
touch. He has been covered in blisters and wounds since he was a few days old and before the operation most of his body looked like an open wound. Doctors grew a new skin in the laboratory
using stem cells genetically altered to eliminate the flaw that causes the disease. In what has been described as a major breakthrough in the use of stem cells to treat disease, this was
then successfully transplanted on to Hassan’s body. Now, 21 months later, having been admitted to a hospital burns unit close to death, he appears to be fully recovered. His new skin has
successfully ‘anchored’ to his body without the symptoms that have plagued him his whole life. WHAT WAS THE TREATMENT? Doctors grew a new skin in the laboratory – which featured stem cells
genetically altered to eliminate the flaw in the gene that causes the disease. In what has been described as a major breakthrough in the use of stem cells to treat disease, this was then
successfully transplanted it on to his body. They took a small piece of skin of around half a square inch from an unaffected part of the body. Gene editing was then used to correct the skin.
They then grew more than 9 sq ft of skin (0.85 sq m) and transplanted it. Born in Syria and now living in Germany, he is able to play football and other games with his friends. Pictures
have been released showing him ‘pinching’ his skin, which would have been impossible before without pulling it off his body. His father said the transformation was ‘like a dream’, adding:
‘Hassan feels like a normal person now – he’s enjoying his life.’ The inherited disease junctional epidermolysis bullosa is the most severe form of a condition affects around one in 17,000
in the UK. Around 40 per cent of children who suffer from it do not survive the first year of life, and most do not survive more than five years. Until now, the disease was considered
incurable. In two operations in November and December 2015, doctors at Bochum University Hospital in Germany used skin created in Italy by Dr Michele De Luca of the University of Modena.
Before the surgery, doctors took a small piece of skin of around half a square inch from an unaffected part of Hassan’s body and used gene ‘editing’ to correct it. They then grew more than
nine square feet of skin to transplant. Details of the treatment, previously used only to reconstruct small areas of skin in two patients, appear in the latest issue of the journal Nature.
Plastic surgeon Professor Tobias Hirsch, from Bochum Children’s Hospital, described Hassan’s critical condition when he was admitted to the burns unit: ‘He’d lost nearly two-thirds of his
skin. ‘After two months we were absolutely sure we could do nothing for this kid and he would die.’ Now he has ‘good-quality’ skin that requires no treatment. The doctors said treating
Hassan provided useful research information about how skin is regenerated and maintained, providing a ‘blueprint’ that can be applied to other stem-cell therapies. Skin specialists hailed
the work but said it must be followed up to make sure that Hassan does not revert to his earlier state. EPIDERMOLYSIS BULLOSA: EXPLAINED Epidermolysis bullosa (EB) is a general term used to
describe a group of rare inherited skin disorders that cause the skin to become very fragile. The skin is missing type VII collagen - a protein that usually binds the top layer of skin to
the bottom layers. Any trauma or friction to the skin can cause painful blisters. In most cases, the symptoms of EB are obvious from birth. It is caused by faulty genes inherited from one
or both parents. There are many cases when both parents are carriers of the faulty gene without realizing it. EB is rare - just one in every 50,000 children in the US has it, while it is
believed that 5,000 people in the UK are sufferers. There is no cure for EB so the treatment aims at preventing blisters becoming infected.