A 7 p.m. on a Friday last August, five-year-old Jamie Spiteri was being his usual energetic and playful self at the swings. Five hours later, he was a vegetable and has shown barely any signs of life since.

The boy suffered brain damage in the minutes between being moved from the hospital's emergency to the ITU. His family does not know what happened behind those closed doors, although they have reason to believe that an accident occurred while Jamie, who had just had a pipe attached to assist his breathing, was being transferred.

They are considering taking the case to court, although they know they would have to face a tough battle and that it would be hard to prove.

But this would probably be nothing compared to the war they are fighting to bring Jamie back to normality, using their one and only weapon, but probably the strongest - hope!

For the moment, the desperate Spiteris are focusing on Jamie's health, though the anger still shoots out of his grandfather's eyes as he continues to "invest" thousands in his chance to be able to communicate and regain independence; to "come close to life... to come back to what he was..."

Although there is no need, he justifies his frustration: "You are not talking to the undertaker Ronnie Spiteri here; you are talking to a broken heart! We are a broken family.

"I want to raise awareness. Even though it happened to us, I don't want other children to go through it. Jamie's is a one-off case - that a child suffers brain damage due to complications. We cannot write it off as an 'unfortunate case' as we were told in ITU."

Jamie was a healthy, happy-go-lucky boy, his eyes were like lit bulbs and he was so inquisitive they used to call him "20 questions".

Suddenly, although those same eyes may be open, he is staring blankly, and from 20 questions, his grandparents wish he could simply ask for an ice cream.

Carmen and Ronnie Spiteri are speaking at Mater Dei Hospital's Rainbow ward on behalf of their son Alan, who is in the US with the rest of his family, where Jamie is undergoing treatment at the Ocean Hyperbaric Neurologic Centre.

The saga started last summer when Mrs Spiteri heard a whistling sound as Jamie laughed. It was a Monday and, by Friday, Jamie had visited the doctor four times, and was diagnosed with "doubtful" asthma. That was bad enough for his "obsessed" father, who unhappily acquiesced to the use of an inhaler.

At the swings that evening, Jamie fell to his knees and asked his father to carry him, claiming he was exhausted. No big deal... but for tireless Jamie it was. His father rushed him to hospital, where a chest X-ray eventually revealed a stain that was inevitably "some form of cancer". Jamie, until then aware of what was going on, was sedated so that a tube could be attached to assist his respiration and he was rushed to the ITU - supposedly for two days of observation.

About 30 minutes later, however, the doctor emerged, asking for his parents and informing them that Jamie had died. In the same breath, another doctor came out to say that he was stable, the grandparents relate, expressing the shock of the moment.

They said the boy was kept sedated for eight days, during which time his family did not move from his bedside.

"One day, he was not sedated in a bid to wake him up. He opened his eyes, but stared blankly. Following doctor's instructions, I spoke to him all day about the things he loved, bringing his favourite toys to try and revive him until my throat was dry..."

After all her attempts, though, Jamie was sedated again, she said, adding that the incomprehensible reason was because of the lack of staff at night in case he came to.

One day, Mrs Spiteri overheard that Jamie had suffered brain damage and she was overcome by panic. It was too much to bear and the family does not believe it was caused by what was diagnosed to be leukemia.

"We are not doctors but we think his head fell back in the move, the pipe was blocked and no oxygen went to his brain..."

Jamie spent seven weeks in ITU and then moved to Wonderland, where he celebrated his sixth birthday - although it was not he who blew out the candles on his cake.

"He is like a newborn baby. If you lift his hand, or head, they would flop down immediately," his grandmother said.

Jamie has now undergone treatment for leukemia and it has been cured. But the leukemia was always accepted. It is the brain damage they cannot digest, imagining him at least running through the corridors of the ward.

The Spiteri family have left no stone unturned and their determination is evident in things that others would possibly take for granted: "My son had never used the internet but he figured it out to find the best clinic for Jamie. It was a miracle he managed to communicate with its medical staff in English and using heavy, technical terms..."

Their determination is also evident in the big things: Mr Spiteri has estimated that the treatment at the centre in the US would run up to €93,000 - three times the original figure - given the complications that have arisen and the fact that they have decided to extend their stay from one month to three.

"I am ready to sell all I have and my other children are insisting that I give whatever it takes for their nephew," Mr Spiteri said.

Consultants did not approve of the treatment, saying it was a "gimmick" and "cosmetic", Mrs Spiteri said. "But what is so cosmetic about the brain?" The family has rejected claims that Jamie is a vegetable and that any treatment would be a waste of time.

"We wanted to go, whether they laughed at us, or not. We were promised a multi-disciplinary team of speech and physiotherapists but the output was extremely poor. So we went to get it ourselves... I cannot leave a life in a bed now that we found an opening. At least, we could say we tried."

And they maintain that Jamie has shown improvement, able to remain sitting if he is positioned, holding his head up and communicating with his eyes.

The family had initially calculated that the hyperbaric oxygenation therapy alone would cost $10,000 but other expenses have cropped up and there were hiccups along the way, sending their budget skyrocketing. Jamie has had to be hospitalised due to high fever and five days have cost the family another €23,000.

"We were promised the world by the government and individual ministers before and after the election," Mr Spiteri said. But nothing materialised.

Although they have not asked for a cent - "it's not a question of pride; we are embarrassed" - the grandfather has already forked out €49,000 while other relatives have given another €28,000 and the banks and Appoġġ have also contributed.

The Puttinu Cares Children Cancer Support Group has helped with flights, accommodation and equipment, urging the family to take up Jamie's traumatised 10-year-old brother and a nurse.

Any donations to the support group are going straight into Jamie's cause.

They can be made to 5004 9543 (€7); 5004 9545 (€11); and 5004 9540 (€23) for Go subscribers; and 5003 6803 (€7); 5003 6805 (€11); and 5003 6810 (€23) for Hello subscribers.