Fatum and Muhamad Jahalin, a Bedouin Arab couple living in the Israeli desert, knew something was gravely wrong with their son Ahmad days after he was born in 2003.
At the time, there was no precise genetic diagnosis, but Ahmad was rapidly progressing to end-stage liver failure and desperately needed a liver transplant.
Fatum was preparing to donate part of her liver when the couple received a call that “a whole liver was found for your son.”
The boy’s highly complex operation, performed at the Schneider Children’s Hospital in Tel Aviv, would be the start of a miraculous life-saving relationship between the facility and the family — again and again.
In addition to Ahmad, two more of the couple’s sons would go on to develop liver issues because of their genetic disorder, called PFIC 3.
And each boy got a liver transplant at the medical center, the region’s only children’s hospital and one that treats any child regardless of religion or nationality.
“I want to say thank you to the state and all the doctors, everybody helped,” the boys’ grateful dad said.
In Ahmad’s case, his donated liver came from an Arab man in Jerusalem who died when he fell off a building.
The couple’s son, Khaled, who was born in 2007, received a liver from a Jewish man.
“Again they wanted to take part of the liver from [Khaled’s] mother, so again at the last minute we received a call that someone had drowned, and the liver was donated. He was a Russian Jew,” Muhamad said of the donor.
A third son, Moussa, was born in 2012 with the same genetic abnormality and was immediately transported to Schneider for “him to grow and for the mother to give some of her liver.”
Once again, a whole liver turned up.
“There was a car accident in a Bedouin village not far from here, and the parents decided to donate the organs” of their dead child, Muhammed recalled.
Ahmad is now 21, married and expecting a child. Khaled is 17, and Moussa is 12.
The Jahalin family, who have eight children, are among an indigenous group of people of the Negev desert and are semi-nomadic.
They live in conditions that can best be described as spartan. A tin roof, cement floors, no electricity or running water.
“We know how to live without running water, we can dig and find water in the ground,” the family patriarch explained. “When we eat bread, we eat the bread we make, and we don’t use preservatives.
“We make cheese from goats. We don’t buy meat, we use our meat so we know exactly what the goat is eating and the goat meat is good.”
But the parents also believe in modern medicine.
They were hyper-vigilant about making sure their sons took their medication as needed during the process — something that the hospital’s CEO, Efrat Harlev, noted is difficult for some patients living in their situation.
“The one sentence you always heard in the house was, ‘Did you take your medication?’ ” Muhamad said.
