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News items on 'Congenital Myasthenic Syndrome'
Father drops right to life fight
(BBC 10/11/2009)
A father who had been fighting to stop a hospital withdrawing life support from his seriously ill son has dropped his objections. The one-year-old, known as Baby RB for legal reasons, was born with a rare, genetic muscle condition that makes independent breathing impossible. The hospital was backed by the baby's mother. But the move had been strongly opposed by the child's father at a High Court hearing.
Doctor says baby 'better at home'
(BBC 05/11/2009)
A doctor has said that a baby in a "right-to-life" legal row has the potential to communicate and even operate a wheelchair in years to come. The paediatric neurologist, Professor Fenella Kirkham, told the High Court that Baby RB had the normal intelligence of a one-year-old. She said he was likely to develop language recognition skills and he may be better off at home. The boy's father is fighting an attempt by the hospital to end life support.
Doctor admits baby 'may interact'
(BBC 04/11/2009)
A doctor has agreed a baby in a "right-to-life" legal row may be able to interact - but any mental development would only make his fate more tragic. The paediatric neurologist told the High Court the severely disabled child, Baby RB, would remain in a "no chance" situation even if he developed further. He questioned the life the boy would lead if he was capable of cognitive function but physically so disabled. The boy's father is fighting an attempt by the hospital to end life support.
Baby RB surgery 'not an option'
(BBC 03/11/2009)
A one-year-old boy at the centre of a "right-to-life" legal dispute would not benefit from an operation to help him breathe, the High Court has been told. The child, known as Baby RB, has a rare, genetic condition (congenital myasthenic syndrome) that makes it hard for him to breathe independently. But a leading paediatrician, known as Dr F, said he was "not a candidate" for surgery. Baby RB's father is fighting a hospital's attempt - backed by the mother - to withdraw his life support.
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