The electricity pylons that could mean the difference between life and death for Ennas al-Atrash are dotted a few hundred yards from the little girl’s village in Israel’s Negev desert.
But the residents of Sawa are Bedouin Arabs whose village is deemed ”unrecognised” by the state, and so they are deprived of the basic services that Ennas’s doctors say are essential if the frail three-year-old is to have a chance of survival.
Ennas was diagnosed with cancer in her chest cavity in January and subjected to weeks of chemotherapy and two operations. She was sent home to recover with a daily injection of medicine to boost her collapsed immune system. The drug has to be stored at a steady temperature between zero degrees and 4C.
But the Atrash family has no reliable means to do so because the Israeli government refuses to allow 80 000 Bedouin Arabs to be connected to the power, water or sewerage infrastructure on the grounds that their villages are illegal — even though many have stood since before the modern Israeli state existed.
It has made no difference that Ennas’s father, Yusuf, is a doctor in Israel’s state health system who treats other, more fortunate, children while his own daughter’s health is hostage to politics.
”We put her drugs into a plastic bag and pack it with ice cubes to try to keep it cool. We’re not sure it keeps it the right temperature,” he said.
Last week, Ennas, who has lost her hair and is said by her mother to be terrified of going to hospital, fell victim to secondary infections and underwent another operation. The doctors say she needs radiotherapy and more drugs to boost her immune system. But the family still has no proper refrigeration.
The Atrash family shares a generator with four other homes, but the cost of running it constantly is so high — about $1 605,98 a month, which is the average monthly wage in Israel — that it is turned on for only four hours each evening.
The family says its last hope is a petition to Israel’s highest court to be heard on Thursday.
”We’re arguing that the right to life and health are among basic human rights and these cannot be violated on what is basically a planning issue based on discrimination against the Arab-Bedouin minority,” said the family’s lawyer, Sonia Boulos.
Yosef Kaploshnik, the head of paediatric oncology at the Be’er Sheva hospital where Ennas is treated, has written to the court saying that electricity is needed not only to store medicines, but to provide air-conditioning as protection against the sweltering summer heat that can trigger lethal secondary infections.
”I believe that if we were living in a better situation, my daughter would be responding in a better way to the treatment,” said Atrash. ”Certainly, she wouldn’t be suffering from these other infections. They are making her general condition worse.”
Atrash spent months pleading with government departments. Officials said they were constrained by the law, although this has not stopped the infrastructure ministry from providing power, water and roads to Jewish outposts in the West Bank which are also regarded as illegal.
”The electric company told us that, according to the law, we needed all sorts of permits from the local planning committee, but because they do not recognise that our village exists there is no local planning committee,” he said.
So Atrash turned to the interior ministry, which is responsible for implementing the decision that Bedouin villages are ”unrecognised”. At first, it recommended that he should move to a ”legal” village. But the doctor, who was born in Sawa and whose family has lived there for generations, said he relied on his relatives living nearby to care for his five other children when Ennas was in hospital.
On Monday, the interior minister, Ofir Pines Paz, said he was ”taking care of the case” but could not give details.
His officials said the interior ministry had written to the infrastructure ministry a month ago, saying that it had legal authority in the issue and asking it to do something.
A spokesperson for the infrastructure ministry, Tami Skinkman, said on Monday: ”My minister dealt with the problem. He gave an order to connect the house to the electricity because he felt it was a matter of life or death. But, unfortunately, he doesn’t have the final authority so the house hasn’t been connected. The law is above him.”
Asked who does have the final authority, Skinkman said: ”Probably the courts.” – Guardian Unlimited Â