How experimental gene editing saved this dying boy’s skin - and life
As discussion turned to making Hassan’s last days as comfortable as possible, his parents urged doctors to try ‘anything’
A boy who nearly died when disease stripped most of the skin from his body, is playing soccer two years after he received a new, gene-edited hide in an experimental procedure, the doctors who treated him said.
Hassan, then seven years old, was admitted to hospital in June 2015 with the “devastating” effects of a genetic disease called Junctional epidermolysis bullosa (JEB) that has tormented him since birth.
The disease causes the skin to blister and come off at the slightest touch.
Doctors were at a loss. After trying everything they knew, they concluded the child would die.
He was admitted to the Ruhr University Children’s Hospital in Bochum, Germany “because he had developed an infection in which he rapidly lost nearly two-thirds of body surface area” of the outer skin layer called the epidermis, said Tobias Rothoeft of the hospital’s burn unit.
“He was in a septic state he was severely dystrophic (wasting away), so we had a lot of problems in the first days keeping this kid alive.”