The case of the then seven-year-old boy made international headlines at the end of 2017: In 2015 and 2016, the child suffering from the life-threatening butterfly disease (Epidermolysis bullosa) was the first person in the world to have genetically modified 80 percent of his skin in the burn injury center of the Ruhr University in Bochum Get stem cells replaced;

a short time after the last operation, the little patient was able to leave the clinic.

In a long-term study just published in the “New England Journal of Medicine”, the participating physicians from Germany and Italy now show that the sensational success seems to be permanent.

Pure burger

Political correspondent in North Rhine-Westphalia.

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The condition of the boy's transplanted skin is still “robust and stable” six years after the last operation, says Tobias Rothoeft, who looked after the patient in the intensive care unit for months.

"We were also able to show that the skin made from genetically modified stem cells has the same sensory qualities as normal, healthy skin," says the senior physician at the Bochum University Children's Clinic.

"So in the transplanted areas the boy is to be regarded as healthy."

Vulnerable like the wings of a butterfly

Epidermolysis bullosa is a hereditary disease. Affected boys and girls are also called butterfly children because their skin is reminiscent of vulnerable butterfly wings: it is extremely thin, brittle and, with minimal influences, blisters, tears and dissolves. So far there has been no curative therapy for butterfly disease. Things were also bad for the boy treated in Bochum. At the beginning of the treatment he was lying in bed like a mummy, wrapped in bandages from head to toe and completely emaciated from his many chronic wounds and infections. All conservative and surgical therapy attempts were unsuccessful.

In collaboration with the Center for Regenerative Medicine at the University of Modena, the Bochum doctors decided to remove skin from the patient in order to obtain stem cells from it.

The researchers in Modena “repaired” the genetic defect in these stem cells in order to be able to grow epidermal tissue.

Never before had the stem cell procedure been used on such a large area of ​​skin.

Since his discharge from the clinic, the boy has been taking part in “age-appropriate activities”, as the researchers report.

New blisters did not form on the patient's skin and his immune system was intact.