Epidermolysis bullosa is a rare genetic disease that causes fragile skin all over the body to painfully blister and break open at the slightest touch.
Some parents of children living with EB refer to them as “Butterfly Children,” because their skin is as delicate as a butterfly’s wings.
Hassan’s parents were desperate to save their son, who German doctors say was close to death. They consented to a very progressive and controversial treatment that ultimately saved his life by rebuilding Hassan’s skin piece by piece.
Led by renowned stem cell researcher, professor, and physician Michele De Luca, a team from the University of Modena and Reggio Emilia in Italy used a technique that involves attaching genetically modified skin grafts to the dermis, the tissue underlying the external layer of skin.
The researchers on De Luca’s team took skin cells from a non-blistered area on Hassan’s body and used them to establish and build protein cultures that were genetically modified to be free of the mutation of the gene LAMB3, which causes the condition epidermolysis bullosa.
Little by little, the genetically altered skin was grafted onto Hassan’s body over the course of three surgeries. 21 months later, Hassan is a normal, active seven-year-old boy.
The new skin has taken to Hassan’s body without rejection and he no longer lives in constant pain.
Moin Younis Has Become A Role Model For Those Living With EB:
What makes the procedure controversial is an attempt back in 2002 at using gene therapy to treat severe combined immuneodeficiency (SCID) ended up triggering cancer in some patients.