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March 2004-September 2005: boy sleeping

Purushottampur (East Midnapore), Sept. 18: Arup Manna was a bright eight-year-old, good enough to score 80-90 per cent at school even as he pursued his passion for cycling.

Today, he sleeps almost through the day and has lost his speech.

The boy is struck down with a rare disease of the brain that has, in doctors' words, 'altered his state of consciousness'.

The first signs, in March last year, had left his parents puzzled. He had begun dozing off while studying for his Class III final exams.

Worse, he seemed to have developed an unexplained fear of riding his bicycle.

'We took him to Digha for a holiday, but he seemed frightened of the water,' said his mother Ruby, a nurse with the block primary health centre in nearby Panskura, about 90 km from Calcutta.

Mother and son lived with her father in Purushottampur while Arup's father Aloke Manna worked as a mechanical engineer in Jamshedpur.

'Arup's sleepiness grew. It became almost impossible to wake him up for dinner,' Ruby said.

'He could not sit for his exams. By August, 2004, his steps had begun to falter, his handwriting became illegible and he could hardly keep awake at any time of day.'

Today, the boy, now nine years old, has to be shaken awake by his mother for food and medicine. But even for the hour or two he is awake, he cannot fully shake off his stupor and chews his food in a daze. He sometimes sleeps with his eyes shut, at other times with his eyes half open.

His parents took him to physicians in Calcutta, but his condition did not improve.

'We then took Arup to Apollo Hospitals in Chennai and later to the Christian Medical College in Vellore,' said Ruby's father Bishnu-pada Mondal.

'In Vellore, he was treated for about a month, but without significant improvement. We also consulted a neurologist in Cuttack. The last time he uttered the words 'dadu' and 'maa' was on September 6. Then he stopped speaking.'

But there has been some improvement in the past two months. 'Earlier, he had to be fed through a nasal tube. Now he can sometimes eat off a spoon and chew and swallow his food,' Mondal said. 'If he is loudly called by name, he starts in his sleep.'

Neurologists said Arup has a condition known as encephalopathy.

'The disease is very rare. It is not possible to say whether it can be cured,' said Shyamal Das, a professor of neurology at Bangur Institute of Neurology.

'It is caused by a disorder in the hypothalamus and the reticular system in the brain that together control sleep, the cycle of sleep and wakefulness as well as the desire for food.'

Das said the ammonia level rises in patients and their condition might improve marginally if this is controlled. They should be given a low-protein diet.

The chief medical officer of health (CMOH), East Midnapore, Subrata Dutta, said a team of specialists will be sent to Purushottampur to examine Arup.

'We shall make all necessary arrangements for his treatment,' he said.

Arup's mother has applied for transfer to a health centre nearer her home and asked to be excused night duty.

'We know she has a serious patient at home and we are considering her application sympathetically,' Dutta said.

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