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'Butterfly child' given life-saving skin

'Butterfly child' given life-saving skin
From BBC - November 8, 2017

A child has been given a new genetically modified skin that covers 80% of his body, in a series of lifesaving operations.

Hassan, who lives in Germany, has a genetic disease - junctional epidermolysis bullosa - that leaves his skin as fragile as a butterfly's wings.

A piece of his skin was taken, its DNA was repaired in the laboratory and the modified skin grafted back on.

After nearly two years, the new skin appears completely normal.

The family's full details have not been released to protect their privacy, but Hassan's father said the transformation was "like a dream".

"Hassan feels like a normal person now, he plays, he's being active, he's enjoying his life and he's not the way he was before," he said.

Weak skin

Hassan was born in Syria and has had blisters and wounds all over his body since he was a few days old.

Normally, the different layers of the skin are held together by "anchoring proteins".

But the junctional epidermolysis bullosa means Hassan's DNA lacks the instructions for sticking his epidermis (the surface layer) to the dermis (the next one down).

There is no cure, and about four in 10 patients do not even reach adolescence.

Hassan attended the Children's Hospital at Ruhr-University, in Bochum, Germany, in June 2015.

The seven-year-old was missing a massive amount of epidermis. Most of his body looked like a red-raw open wound.

Doctors were preparing the family for the worst.

Dr Tobias Hirsch, from the hospital, said: "We initially decided to provide palliative care because we had no chance to save the life of this child."

But a team of biologists specialising in gene therapy were brought in from the University of Modena and Reggio Emilia, in Italy - and the parents gave approval for them to try an experimental therapy.

So how did they save Hassan's life?

In September 2015, a 4 sq cm (0.6 sq inches) patch of skin was taken from an area where the epidermis was still intact.

The biopsy was then infected with a customised virus.

'Goosebumps'

Clinical trials

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