A Palestinian child holds a candle at a protest against Israel's power cuts to the Gaza Strip last week. (Wissam Nassar, Maan Images)

It's 8pm on Monday evening and the Aseli family is in full emergency mode. The power has just gone down in their apartment - for the second time that day - blacking out the lights and the electric heater.

Abed al Aseli, father of the household, rises to light a lamp powered by cooking gas while one of his sons moves in a swift, practised way towards the bed of Maher, 12, in what is literally a life-or-death mission. Maher, paralysed from the neck down for the past six and a half years, normally relies on an electric respirator to breathe. When there is no power, the only alternative, however long the outage lasts, is to maintain his breathing manually with an Ambo hand pump.

Which is why, since last week's cut in fuel supplies to Gaza's power station, Mr al Aseli has recruited his five teenage nephews and nieces to help him, his wife, Alia, and their four other sons and two daughters, aged between eight and 21, working in rotation throughout the night, if necessary, with the nerve-racking, exhausting, task of keeping Maher alive.

Mr al Aseli says this is stressful for the whole family, and that his wife has to spend a disproportionate amount of time caring for Maher in what the family has made, in effect, into a home intensive care unit. "It is very difficult," he says. "If the power goes out at 1am, I have to shout and immediately wake up the kids."

The tragedy which first put Maher into this state had nothing to do with the Israeli-Palestinian conflict. As Mrs al Aseli explains, when Maher was five and a half years old, he was driven by his father to a local supermarket. Mr Maher

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left his son in the car while he nipped into the store, but as he started to make his way back, he saw in horror that Maher had managed to get out of the car and was crossing the road towards him. Mr Maher shouted at him to stop where he was but Maher was run down close to the family car by a fast-moving taxi whose driver failed to see him. Maher's spinal cord was injured between the second and third vertebrae, leaving him quadriplegic.

He was eventually allowed home - with regular visits from a nurse and doctor - on condition the family used their $36,000 insurance payment to provide everything needed for his home care, including everything from the respirator; suction equipment (also electrical but luckily capable of being run on batteries for 12 hours) for keeping Maher's lungs clear; a medical bed; regular supplies of sterilised tubing and surgical gloves. And, of course, a hand pump for when power is not available.

The reason Maher's case is under discussion now is that it was jointly cited last Sunday in the Israeli Supreme Court - complete with an affidavit from Mr al Aseli - by two Israeli human-rights organisations: Gisha and Physicians for Human Rights.

The two groups were among ten petitioning the court against what they described as the "punitive" cuts in fuel Israel had already imposed - and the planned cuts in electricity directly provided to Gaza - in response to the continued firing of Qassam rockets by Gaza militants, rockets which have been inflicting misery on the Israeli border town of Sderot and other communities in the western Negev.

They were seeking to illustrate that it is impossible to make such cuts without humanitarian cost and that the response constituted what the petitioners insisted was "collective punishment" of Gaza's 1.5 million population.

In the affidavit submitted to the court on Sunday, Mr al Aseli testified to the "terrible anxiety" suffered by the family "especially at night" and said the problem was compounded by the fact that Maher's condition meant he also needed to be kept warm on cold winter nights. With the loving and vigilant family he has, Maher is not going to die. His uncle Mahmoud, a doctor, says that even with only 75 per cent of his respiratory muscles totally dysfunctional, Maher could probably manage - in extremis and with difficulty - to breathe alone for about an hour.

And there is some help from a generator belonging to a nearby health centre, though that only normally operates between 8am and 8pm (apart from interruptions when it breaks down or runs out of diesel) between Sunday and Thursday, shutting down at weekends.

But the strain of looking after his son during the lengthy periods - often around eight hours - that it has been off in recent days is etched on Mr al Aseli's face. When Gaza's power station was put out of action by an Israeli missile strike in the summer of 2006, after the abduction by militants of the Israeli corporal Gilad Shalit, Mr al Aseli bought a large generator for $8,000, which guaranteed 24-hour power for Maher's ventilator. But last year, with power more or less back to normal, and the combination of crossing closures and the international embargo on the Hamas-led administration elected in 2006 hitting his business hard, he sold it. "I didn't need the generator and I did need the money," he explains.

To read the full article please visit The Independent.