Statement On The Baby RB Case - Muscular Dystrophy Campaign

Main Category: Muscular Dystrophy / ALS
Also Included In: Pediatrics / Children's Health
Article Date: 15 Nov 2009 - 0:00 PST

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A baby with a rare neuromuscular condition who has been on a ventilator in hospital since birth, known for legal reasons as Baby RB, has been at the centre of a legal debate between his parents - a debate which has now ended with the baby's father withdrawing his objections to the ventilator being switched off. He was born with congenital myasthenic syndrome, a muscle weakness that limits the movement of his limbs and his ability to breathe on his own.

Muscular Dystrophy Campaign's statement on this case:

The Baby RB case has highlighted issues which, although rarely brought to the attention of the media, can affect families coping with muscle disease. The Muscular Dystrophy Campaign recognises the tragic situation that Baby RB's parents find themselves in and that unfortunately the resolution of this case is devastating for all parties involved.

Congenital myasthenic syndrome is the collective term for a group of inherited congenital disorders that affect the way messages from the nerves are sent across to the muscles. Symptoms normally start in the first years of life with varied disability ranging from mild to severe muscle weakness.

The Muscular Dystrophy Campaign is here to provide support for all families affected by muscle disease through our freephone information support line and care team. We also continue to invest over £1million each year into pioneering research to find treatments and cures for muscle disease.

Source
The Muscular Dystrophy Campaign