The Royal Hospital for Neuro-disability in Putney, southwest London. When my son Tom was admitted I imagined how patients must have felt when it was called the Royal Hospital for Incurables.

It was August 2003, four months since Tom had been shot in the head by an Israeli soldier in the Gaza Strip — four months since we had started trying to get at the truth of what had happened, running again and again into obstruction by the Israeli army.

I had a sense that my family was fragmenting, each of us locked into our own particular nightmare. We had always talked, and we still did, but now there were no-go areas, things none of us could really bear to discuss. One of these was what we were going to do about Tom, who had been unconscious since the shooting.

Though we knew that Tom was never going to recover, we had no real idea of how long he was likely to continue as he was, or how we were going to deal with it. We knew there must be a limit to the limbo of his existence, but we couldn’t yet bear the thought of letting him go.

Three friends who had been at school with Tom at Winchester came to visit him. When we entered his room he was sitting upright, supported in a wheelchair. This was almost more disturbing than seeing him lying down. Quite early on, I’d nearly collapsed on seeing him sitting on a bed wearing a T-shirt and tracksuit bottoms, supported by two physiotherapists, his unseeing eyes gazing straight ahead.

Now the boys stood round him. Their shock and sadness were plain. One of them touched him gently. These were young men who had known Tom when he was active, funny, challenging, full of life. They’d played football together, sat in class together, enjoyed loud music. Now they looked down at the wreck of the person he had once been, and I could see they were remembering. They were a part of him, and he was a part of them. The relationship was clearly still there. And yet Tom wasn’t.

The whole family was feeling the weight of his suffering and we were all responding differently. Sophie, his elder sister, moved away from home to live in a friend’s flat. Fred, his youngest brother, who had hero-worshipped him, was quiet and sad and spent a lot of time in Tom’s room. Billy, our middle son, transformed Fred’s old room to make it more inviting. It tore at my heart to see how he was trying to take care of Fred.

As October came, and the old trees in the hospital gardens began to lose their leaves, something intangible told me Tom’s death was approaching, however slowly.

He had been shot in the town of Rafah, while wearing a fluorescent jacket to show he was one of a noncombatant group of young volunteers who opposed the destruction of Palestinian homes. Anthony, Tom’s father, who is a lawyer, had gathered evidence in an extensive report that was passed to the Israeli authorities. We believed it showed that Tom had been murdered. Out of the blue, at the end of October, we heard that the judge advocate-general in Israel had ordered an investigation. “Quite unprecedented,” said the man from the Foreign Office.

Anthony and I were both spending more and more time at the hospital. Tom’s breathing was very shallow and his bones were visible beneath the translucent skin. Often he jerked his head, his hands clammy, his forehead damp with sweat. We were all certain that he was in pain.

Anthony and I both believed that, as parents, we had a serious responsibility to ask that he should not go on suffering. It wasn’t that Tom simply had no quality of life; it was worse than that, it was a totally negative quality. The gift of life had come to seem even more precious to me during the past six months, but I knew Tom’s condition was not life.

At a meeting, Patti Simonson, the hospital social worker, explained to us that, though consultation with the family was crucial, the decision to allow Tom to die was not ours to make. Nor did it lie in the hands of the hospital and primary care team; it rested with the court. Professor Keith Andrews, the senior doctor and a kindly man with an encouraging manner, asked us: “What do you think Tom would have wanted?”

I told him of a passage in Tom’s last journal where he described in detail what had happened to Rachel Corrie, the American protester crushed to death by an Israeli Defence Forces (IDF) bulldozer in Rafah three weeks before he was shot. He wrote that with such a maimed body he would not want to survive. We discussed whether this might constitute a kind of advance directive.

Everything around me seemed distant and unreal. I was asking whether my child should be allowed to die. A part of me could not believe this was happening, and yet I knew that if we asked that Tom should be kept alive it would be not for him but for us.

I had no idea of the legal complexities that this would involve. First, an application would have to be made by the primary care trust to the family division of the High Court to withdraw food and hydration from Tom. Under British law there could be no merciful injection. Since Tom was breathing on his own, there was no life-support machine to turn off.

This application would have to be accompanied by a report on his condition from an independent medical expert and by a witness statement from someone speaking on Tom’s behalf. If the application was granted, Tom would be moved to a house in the hospital grounds and we, his family, would be able to live there with him until he died. We would have to watch him die of thirst.

Anthony looked at Professor Andrews and asked: “How long is this likely to take?”

“Normally 10 days to two weeks.” We sat gazing at him, unable to speak. “Isn’t there any other way?” I said finally.

“No, there isn’t. This is where British legislation stands,” he said. He was clearly a humane man in a painful position. This was a high-profile case, and the hospital could not afford to put a foot wrong. But the idea that we had to put Tom through this agonising process seemed barbaric, incredible. Why could the law not acknowledge that increasing doses of morphine would probably kill him anyway, and agree that his misery should be ended now? I tried to imagine what it would be like for Fred — for all of us — to watch Tom die of dehydration.

All I could say as we left was: “Professor Andrews, if you ever want me to speak publicly in favour of giving a lethal injection, about the need for all this to be done differently, then I will.”

Short of taking Tom to a country like Holland or Switzerland, which seemed unthinkable in his condition, there appeared to be no other way. So the hospital set wheels in motion, and a week later, in the presence of Anthony and Sophie, I made a witness statement on Tom’s behalf to a sympathetic young lawyer, Kiran Bhogal, setting out my belief that it was “not, in the existing circumstances, in Tom’s best interests for him to be given life-sustaining medical treatment measures (including ventilation, nutrition and hydration by artificial means)”.

I strove to give as full and truthful a picture as I could of Tom’s present state and an interpretation of what his own wishes would have been. “What I am clear about is this; that this is not what Tom would have wanted,” I said. “I am trying to meet his wishes even though in my heart I would always want him to be there. To be mature and rational I need to let Tom go, for Tom’s sake.”

Anthony, Sophie and I all signed. As we left the solicitor’s office I was overwhelmed by the weight of what we had just done. I said to Anthony: “I feel as though I’ve just killed Tom.”

It was horrifying to see the Evening Standard headline a few days later, “Let the human shield boy die”. The press had got hold of the story, and the Daily Mail and other national newspapers trumpeted the fact that we were applying for permission to “turn off Tom’s life-support machine”.

I was devastated. It felt like the grossest intrusion into something deeply personal, as if my innermost soul had been invaded, and I paced the house at night, distraught, unable to sleep. Suddenly all our anguish was public property, the agonising decision we had made reduced to a few crude and simple sentences.

Soon we began receiving letters from the pro-life lobby. On the whole they were polite, but I was sickened by their holier-than-thou tone. These were from people, I was certain, who had never experienced the pain of seeing their child in Tom’s condition. For whose sake were they asking us to keep him alive? To me it felt like arrogance. The hospital, too, was unhappy with this unwanted publicity.

November 27 was a day I had been dreading: Tom’s birthday. He was 22. It was a family tradition on birthdays and special occasions to have a hydrogen-filled balloon bearing a special message floating above the kitchen table, attached to the fruit bowl.

The last time I’d bought a balloon for Tom had been the previous September, on the day he was going off to university. I’d got one in the shape of an enormous champagne bottle with the message “Good Luck Tommo” on it. It had been such a happy day, full of anticipation. We’d all sat down to coffee and croissants, with Tom — typically — still filling out his university bank form. Then, etched into my memory, was the picture of Tom and Billy hugging and hugging as they said goodbye like a couple of young bears, exuberantly lifting one another off the ground in a rocking motion.

Today, on this saddest of birthdays, I went to the Party Shop, the same shop I’d been going to for years to buy a balloon for Tom. I chose one in the shape of a star, with the words: “To dearest Tommo, with all the love we have. Mum, Dad, Sophie, Billy and Fred.”

Tom was looking extraordinarily peaceful as I tied the balloon to the end of his bed. Winter sunshine flooded in through the big windows and he lay in a kind of halo of light. He was so frail now he seemed hardly there.

I wanted Billy and Sophie and Fred to be able to associate Tom’s dying with some kind of beauty rather than with pain and horror. I thought of lighting candles, buying lovely flowers. But in the end I knew I would be trying to make something beautiful out of something bar-baric that should never be happening. Tom was going to die, one way or another, but our other children would have to carry on, and I felt deeply concerned about the effect all this was going to have on them.

On New Year’s Eve the phone rang early. It was the Foreign Office, with news that an IDF soldier had been arrested for Tom’s shooting. When interrogated, he had confessed to knowing that Tom was an unarmed civilian. He had not yet been charged, but the Foreign Office would keep us informed.

Each day now we could see that Tom was growing weaker. He had developed pneumonia and his breathing was laboured and shallow, however many times his chest was cleared. The morphine was having less and less effect, and he shifted restlessly as if in pain. I sensed as I sat beside him that he had now entered a shadowland, a place nearer to death than to life. Yet the will to live in his young body was so strong, it still could not surrender. I could only pray: O God, release my child.

On the first Monday in the new year I asked one of the doctors how much longer he thought Tom had.

“I don’t think it will be very long now,” he said. I asked what that meant. He thought carefully and then said: “About a week.”

It had taken so long to reach this point that the calm, precise answer came like a blow. I longed for Tom to be free of all this horror, but I could not imagine a world in which I could not see him and touch him. All the manifestations of his physical being seemed so precious now — the T-shirts and tracksuits piled up neatly on the shelves, his toothbrush, his shampoo, the small possessions we had brought with him to the hospital.

I called one of Tom’s inner group of friends and explained that we were close to losing him. When they visited they stood looking at him in a kind of loving disbelief, still somehow unable to accept that the Tom they had grown up with and hung out with could be leaving them in this way.

On January 12, I was sitting with my hand beneath Tom’s arm when I felt a kind of energy in his body, and something changed in his face, which was illuminated almost with a look of recognition. Anthony, who was standing by his bed, saw it too. It was as if, with an enormous effort of will, Tom was summoning up all the last energy he had to be with us. Though his eyes were unable to focus, I had the sense that he was looking down at me as I sat in the chair beside him.

I just kept holding him and repeating: “Look, Tom darling, this is Mum. We’re here. Mum and Dad are here. We love you very much. You’re doing so well. Well done, Tom, well done, darling.” And I do believe — perhaps I want to believe — that at some level there was recognition.

That evening when we got home there was a message from the Foreign Office to say that the soldier who had been arrested for Tom’s shooting had been charged with aggravated assault. He was also being charged with obstruction of justice for shooting Tom and then seeking permission from his commander to kill him on the grounds that he was carrying a gun. A second soldier was under arrest for allegedly corroborating his account.

Next day, January 13, was my birthday. I put my face beside Tom’s on the pillow so that I could hear the beating of his heart, feel the quick rise and fall of his breathing. How often I had soothed him like this when he was a small child, unable to sleep. I told him about the soldier, and I promised him that we would make sure justice was done, that we would hold the army’s chain of command to account.

Billy came and we went to the canteen where, with great sweetness, he gave me a card and a birthday present — a little Walkman for me to listen to music on. It was so typical of him to remember.

By late afternoon I sensed that Tom had reached some turning point, and I knew that I must tell Father Hubert, our parish priest. Father Hubert was an old friend. He had known Tom since he was a child, had prayed for him, said masses for him, though Tom had stopped going to church years ago.

I knew Billy wouldn’t like it — Billy and Sophie had both rejected Catholicism in their teens — but in my distress it was all I knew how to do. It had nothing to do with my own faith. I needed the comfort of Father Hubert’s spiritual presence. Tom, I knew, had been a spiritual person, though not bound by any creed. I wanted Father Hubert to bless him on his journey, to help me let him go.

When Father Hubert arrived Billy left the room abruptly. This made me so sad, but I understood, and I hoped that one day Billy himself would understand.

From his small bag Father Hubert took out a prayer book and in his strong, quiet voice began the prayers for the departing: “I commend you, my dear brother, to almighty God, and entrust you to your Creator . . .”

It was dark when he left. I walked with him to the main entrance, and we stood silently with my hands in his before he disappeared into the night.

I walked back along the quiet corridor and took out my mobile phone. There were people who needed to know that Tom would not be with us long. I was just about to make the first call when the phone rang in my hand. It was one of Tom’s nurses. Almost without hearing what she was saying I fled up the stairs and along the corridor towards Tom’s room.

The nurses were standing round his bed. I flung my coat on the floor and ran towards Tom. Someone put a hand on my arm, and I heard someone else say: “He’s gone.”

Extracted from Defy the Stars by Jocelyn Hurndall, to be published by Bloomsbury on April 2 at £16.99.

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A strange meeting in court with the sniper who pulled the trigger

On the morning of May 10, four months after Tom’s death, I stood in the small, wood-panelled courtroom of IDF southern command near Ashkelon. It was the first day of the trial of Sergeant Taysir Hayb, a 20-year-old bedouin, who had shot my son.

Taysir had strong bedouin features, with what appeared to be a scar down one cheek and another on his forehead. When his leg irons and handcuffs were removed, he slouched on a chair between his guards. There was none of the professional formality between them that I would have expected. Occasionally he and the guards would exchange a remark in Hebrew and even laugh.

I looked at him from my place a few yards away with a strange mixture of feelings. Here was the man who had shot my son, the evidence indicated, a sniper taking aim with cool precision through his telescopic sight. Here was the man who had lied, who, we now knew, had made five conflicting statements in an effort to save his skin, and had finally attempted to withdraw his confession.

I thought, too, however, that he was a boy who had been given too much leeway by his commanding officers, functioning within a culture that seemed to give out the message that it was acceptable to shoot unarmed civilians in cold blood — as Tom had been while trying to rescue Palestinian children trapped by gunfire in Rafah.

As the charges were read out, Taysir looked deeply bored. His entire body language indicated what a waste of time he thought all this was, and that he was certain he was going to be cleared. And why should he think otherwise? The IDF chain of command supported its soldiers, did it not?

The main issue under discussion that day and for weeks afterwards was whether statements made by Taysir under questioning were admissible as evidence. He was claiming they had been made under duress.

Much time in court was taken up with the fact that Taysir had previously been convicted on drugs charges, something the IDF seemed to take more seriously than killing a civilian.

He appeared pathetic somehow, as if he was incapable of grasping what he’d done, or the gravity of the situation. Some of the Israeli press had already dwelt on the fact that he was an Arab, a bedouin — basically one of Israeli society’s outcasts, as I was beginning to understand — ie, not “one of them”. They implied that Tom would never have been shot by an Israeli Jewish soldier, but as far as I was concerned this soldier had been trained by the IDF, was operating under their rules of engagement and was their responsibility.

When the commander of Taysir’s regiment was called to the witness box, he argued that if Tom had been standing where the prosecution claimed he was, the bullet that shot him could not have come from the watchtower Taysir had been in. Some houses would have been in the way. The implication was that the shot had been fired by a Palestinian.

That particular watchtower, we knew, had since been moved by the IDF to another position after we had been refused permission to view it from the inside to check for ourselves the line of vision. It soon became clear that the map the commander produced in court had been out of date even at the time Tom was shot, which undermined his evidence.

In September I came face to face with Tony Blair at a dinner hosted by the Arab League ambassadors at the Labour party conference in Brighton.

I had lobbied him for more than a year for assistance in getting justice for Tom but without success. Now Afif Safieh, the Palestinian delegate in London, was sitting at the prime minister’s table, and he introduced me to Cherie Blair, to whom I had also written. When she tapped her husband on the shoulder he turned and gave me his strong, firm handshake. I came straight to the point, telling him I was very hurt that he hadn’t yet publicly condemned the shooting of Tom.

He looked at me with light, glass-blue eyes that couldn’t seem to decide whether they were looking at me or beyond me, and raised his hands and shoulders in a helpless gesture. We talked for a few more minutes. Blair listened attentively, but I found his gaze disorientating because I couldn’t gauge its focus. Later, as he left the room, he looked back and nodded to me. No words, but a gesture of acknowledgment.

In December Taysir took the stand. The judges did their best to get him to open up about what had actually happened, but he kept returning to what he had reported had happened, almost as if he couldn’t tell the difference. What was clear was that Taysir was trying to emphasise that he had only been doing what was expected of him.

On June 27, 2005, he was convicted of manslaughter, obstruction of justice, submitting false testimony, obtaining false testimony and unbecoming behaviour. He was sentenced to eight years in jail. As he was led from the court he tried to break loose from his guards and lashed out in fury at the crowd of foreign journalists — there were very few Israeli journalists in court.

The inquest into Tom’s death was finally held in London, at St Pancras coroner’s court, in April last year. The Israeli authorities had refused to allow the Metropolitan police to travel to the site of the shooting or to release vital documents for the coroner’s investigation directly to him. They also refused to attend the inquest.

The jury concluded: “We the jury unanimously agree that Mr Thomas Peter Hurndall was shot in Rafah in Gaza between 3.30pm and 4.30pm on 11.4.2003. He was shot intentionally with the intention to kill him. The jury would like to express their dismay at the lack of cooperation from the Israeli authorities during this investigation.”

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