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Last Updated: Wednesday, 22 September, 2004, 17:42 GMT 18:42 UK
Bright Asamany

Bright and Christine Asamany
Bright and Christine Asamany. Picture by Patrick Barrie/BBC

Nine-year-old Bright Asamany has severe cerebral palsy. He cannot walk or talk and requires full time care from his parents, Christine and Kennedy.

Bright was born on 28 June 1995 just 24 weeks into the pregnancy. He weighed just 1lb 6oz.

Although Bright survived, some weeks after his birth the doctors told his parents that Bright had suffered a major bleed in his brain.

His mother Christine said: "They said he had a bad bleed and that is going to cause him a lot of problems in his life. I was totally out of my mind, really sad."

Around a quarter of the children in the study were found to have serious physical and learning disabilities when they were assessed at two and a half.

She wanted the doctors to switch off the machines... but was told it would be breaking the law
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Bright himself has severe cerebral palsy and is unable to walk, talk or control his limbs. He also has epilepsy and communicates in his school with eye and facial expressions.

When he was still a baby, Christine says she wanted the doctors to switch off the machines keeping him alive, but were told that they couldn't because it would be breaking the law.

Constant care

As a result Christine and her husband Kennedy have been providing round the clock care for their son for the last nine years.

It is this strain that has sometimes led the family to question whether it would have been better had he not survived.

However when she was asked by the EPICure team to describe her son, Christine wrote: "He is a lovely child and a great survivor."

She said: "He has a low quality of life. He can't walk, talk, or crawl, he can't do anything."

Bright's condition is unlikely to change. When he leaves school at 16, his parents will still have to look after him full-time and rely on social services to help.

Kennedy said that sometimes he wishes Bright had not survived: "When he is in pain, when he is in pain. It happens almost once a week," he said.

He also thinks that if they had another baby born so prematurely that he would ask the doctors to turn the machine off.

Panorama: Miracle baby grows up is broadcast on BBC One on Wednesday, 22 September, 2004 at 21:00 BST.

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Advice and information
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The debate: Dr Malcolm Levene
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The debate: Dr Neil Marlow
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Premature babies - the facts
22 Sep 04  |  Panorama
The Dutch policy
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Waiting for a miracle
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What is the EPICure Study?
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The EPICure children
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Emily Wright
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Thomas Rice
22 Sep 04  |  Panorama
Isaac Bason
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Layla Jane
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Your comments
22 Sep 04  |  Panorama


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