Little Lian
Photo: Ofer Golan
The Israeli hospital home of a Palestinian toddler
Young 2-year-old Lian from Gaza, who was diagnosed with a rare genetic disorder, was admitted to Haifa hospital at the age of 7 months because of terminal renal failure.
The corridors and treatment rooms of Rambam Medical Center are the only home Lian Barham has ever known. The 2-year-old Palestinian was born 200 kilometers away in Gaza, but since the age of seven months, the smiling toddler has been living in Haifa.
Lian suffers from a rare genetic disease, and no treatment for her condition exists in the Hamas-ruled coastal enclave. Without the treatment in Israel, her life expectancy would have been significantly reduced – and her life a tale of misery and pain.
"At the age of seven months Lian had respiratory problems," her mother told Ynet, "Check ups discovered that she also had problems in her kidney, and that her condition was serious."
Maeesa, Khaled, and baby Lian (Photo: Ofer Golan)
Maeesa, her mother, explained how they arrived in Israel: "In Gaza there was no appropriate treatment, so we received a referral to an Israeli hospital. Lian was taken in by Rambam, and we've been here ever since."
The complicated treatment is not often available to children of Lian's age. "She needed dialysis, which they don't do for kids of her age at the hospitals in Gaza, because they don't have the appropriate equipment. It was decided we would stay here until she grows up and can undergo liver and kidney transplant."
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Lian arrived in Israel suffering from terminal renal failure and punching in at barely 12 lbs, because of oxalosis – a genetic disease which affects the liver's ability to manufacture a certain enzyme and leads to a build-up of kidney stones.
"When Lian came to us, her kidneys were not functioning at all; she needed dialysis," said Dr. Daniela Magen, the head of the children's nephrology department at the hospital. "Her genetic disease necessitates treatment with hemodialysis, which works through the blood and not the belly."
Dr. Magen emphasized the reason Lian was being treated in Israel: "While stomach dialysis can be done in Gaza, with out directives, hemodialysis cannot be undertaken there for a child of this size; there is not enough knowledge or appropriate equipment. With us she has dialysis six times a week. We've practically raised her here."
For a year and a half, her parents have slept by her bedside. Maeesa, the 26-year-old mother, and Khaled, the 30-year-old father, had to leave their work and their extended family to dedicate themselves to the treatment.
Maeesa has since learned Hebrew and Lian is making friends with other children in the department, both Jews and Arabs. "It's been very difficult, the disconnect from family and friends," said Maeesa, "But I have no choice. This is my daughter."
The Gazan couple has not maintained isolation during their time in Haifa. "we met lots of new friends which help us here – Jews, Muslims, and Christians who come to visit and host us every once in a while on Shabbat and high holidays."
Kindness of strangers
Because neither parent has been able to work for the period of their stay in Israel, the Palestinian Authority has transferred funds to the family. They have also received donations from Israel to the tune of half a million shekels, according to Lian's parents.
The toddler's genetic disease is extremely rare, with a global rate of incidence of one to a million, but in the Middle East – including Israel and the Palestinian Authority – the disease is a little more common.
"The Middle East has the highest concentration in the world of this disease because certain populations accept the practice of marriage among relative," explained Dr. Magen, "We get a lot of patients suffering from this disease, including from Jenin."
The only way to cure Lian is a combined liver and kidney transplant, according to Dr. Magen. But Lian has to wait: "We can only perform the transplant when the patient is above 10 kilos."
Last month, little Lian had a liver transplant, donated from her mother. In six months, she will receive a kidney from her father. Half of the money for the transplants was given by the Palestinian Authority, while the other half was split among a number of sources.
Rambam Medical Center contributed through The Joan and Sanford I.Weill Israel-Palestinian Friendship Center, while an Israeli-Arab stand-up comedian helped raise funds through a charity tour.
