Doc Says Dying "Butterfly Child" Has 0% Chance to Live. But He's Not Dead Yet


Hassan was diagnosed with junctional epidermolysis bullosa — a rare and life-threatening skin disease. The disease effects the boy’s skin cells, making them weaker and more prone to blisters and infection.

Children who have this disease are often referred to as “butterfly children.” Their skin is extremely weak, like the wings of a butterfly.

There is no cure for epidermolysis bullosa. Doctors told Hassan’s parents that they could only make him comfortable as he passed.

Skin grafts usually don’t work on these patients, but Hassan’s parents tried anyway. Unfortunately, the skin grafts from Hassan’s father didn’t take.

About four out of ten patients with junctional epidermolysis bullosa don’t even reach adolescence, and it was looking like this would be Hassan’s fate as well. “We initially decided to provide palliative care because we had no chance to save the life of this child,” said Dr. Tobias Hirsch, who treated Hassan.

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Instead of giving up, though, Hassan’s parents turned to an experimental treatment. A team of doctors from Italy thought they might be able to modify the DNA in Hassan’s skin, giving him a chance to lead a normal life.

The scientists took a sample of Hassan’s skin that wasn’t affected by the virus, and started making a graft. They genetically modified the skin to try to make it stronger and more durable.

After three operations, doctors covered Hassan’s whole body in the new skin. His father said he looked like a mummy because of all the bandages he wore on his body.

The bandages were finally removed, and Hassan’s parents could only hope. Finally, they received the good news: the procedure had worked.

“His epidermis is currently stable and robust, and does not blister, itch, or require ointment or medications,” the team wrote in their findings. “The child returned to regular elementary school in March 2016.”

After the pain subsided, Hassan was able to live the life of a normal child. His skin is just as durable as anyone else’s.

Years after the procedure, Hassan is still healthy and comfortable. He’s now seven, and shows no signs of the disease that almost cost him his life.

This successful procedure gives doctors hope of a cure for other people who suffer from epidermolysis bullosa. Not every case is as serious as Hassan’s, and doctors are trying to recreate Hassan’s results in adults with the disease.

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“The amount of coverage that (the team) was able to achieve on this patient and the impact that this has had on the patient’s life is really incredible,” Dr. Peter Marinkovich of Stanford University said. “It shows the promise of what we are doing.”

Marinkovich is one of the scientists working with this kind of skin replacement. He’s currently working with adults, but hopes to show parents that the procedure is safe for children with EB.

“This is really the way to go,” Marinkovich told Today. “You can get to the patients early before they have all the complications and suffering.”

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