This is the story of a 6-month-old Palestinian infant from Hebron who suffers from a genetic illness, but whose parents refuse to save her. Like all the other staff members at the Safra Pediatric Hospital in Tel Hashomer, the story has left Dr. Raz Somech of the Department of Hemato-Oncology with many sleepless nights. What causes parents to give up on their child, even when the doctors believe that she can be saved?
I documented Somech’s daily struggle to save lives three years ago in the documentary "Precious Life," which was shot in the hospital’s bone marrow transplant ward. Back then, Somech was fighting for the life of Muhammad Abu Mustafa, a 4-month-old Palestinian infant from the Gaza Strip, who was dying from a genetic illness which caused him a failing immune system. Children with the same disease that Muhammad had are often called “bubble boys,” because in the past they were routinely kept in a plastic bubble to isolate them from viruses and germs that could kill them. Two of Muhammad’s sisters had already died from the same hereditary disease, and none of the doctors who were familiar with the family’s tragic genetic history gave him even the slightest chance to survive.
Somech disagreed, and Muhammad’s story had a happy ending. He is alive today because of a bone marrow donation from a cousin. Two weeks from now, he’ll be entering first grade.
Now, in that very same ward, doctors are fighting for the life of a 6-month-old infant from Hebron. Her parents refuse to cooperate, and have effectively sentenced her to death. She suffers from the same genetic disease — the lack of an immune system in her body — which is common among children born to parents who are close relatives. She also had siblings who died of the illness, but her parents — like Muhammad’s parents — continued bringing children into the world, knowing full well how likely it was that they would have a sick child who would suffer an agonizing death.
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