Baby RB is just one year old, he has an active brain but that is all, he is not a normal one year old, he is suffering from congenital myasthenic syndrome, a rare genetic disorder that causes muscle weakness.

It has severely limited Baby RB’s movement and his ability to breathe independently. Baby RB is thought to be one of only about 300 people in the UK with congenital myasthenic syndrome, which affects sufferers to varying degrees. He has a very severe form.

The condition is the result of a gene abnormality which disrupts the transmission of signals between the nerves and muscles, resulting in muscle weakness. Some people with a mild form of the syndrome can lead relatively normal lives, but other sufferers die within days of birth. There is no cure but drugs can be used to improve symptoms.

BabyRB’s parents both in their twenties love him very much and both are spending most of their time with him, but they have separated amicably.

Now the hospital where Baby RB is admitted wants to withdraw the life support on which the very life of BabyRB depends because they feel that baby’s quality of life is so poor that it will not be in his interest to keep him alive and the hospital is planning to get a court order in order to do so.In this it is supported by the baby’s mother.

The father however has taken a totally different stand he feels that since his beloved son is not brain dead ,he is aware of his surroundings, can hear, feel and also recognise his parents,so a simple tracheotomy, which creates an opening in the neck to deliver oxygen to the lungs, would allow his son to be discharged and cared for at home.

One cannot but sympathise with the parents, both are right and paradoxically both are wrong, the irony is that both want the best for their beloved son.One cannot call mother evil because she wants to end her child’s life and at the same time the father wants to keep alive his son whose chances to lead a normal life are nil but his pain increasing with his age cannot be ruled out.

Should one be practical like the mother or emotional like the father is the devil’s choice and I pray that no other parent would have to face such a choice. The case was supposed to go to the London High Court today.