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Parents: Our agony over baby ruling
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21 January 2009
Doctors will halt treatment and let the nine-month-old boy die sometime on Saturday after the unnamed parents lost a Court of Appeal plea.
They said: "We plan to enjoy what little time we have left with our only and beloved son, who is beautiful, but who has an extremely rare disorder."
Two Court of Appeal judges refused them permission to challenge a ruling by Mrs Justice Parker which gave the hospital treating the boy, named as OT, the right to stop medical treatment keeping him alive.
The parents said only one other child with their son's condition had been identified by modern medicine and added: "We are all in unknown territory".
OT has suffered brain damage and major respiratory failure. He has been kept alive on a ventilator.
In a statement, issued through their solicitor, the parents - who cannot be named for legal reasons - said: "The hospital wanted to withdraw treatment in December but we felt, very disabled as he is, that we had to fight to ensure that he is given every possible chance.
"Relationships with the doctors and staff became very difficult and there are lots of issues which still worry us, but we think we did the right thing even though we were repeatedly told it was hopeless and that we were being irresponsible in not following the medical advice that he should be allowed to die."
The parents, who could not face hearing the decision of the court and waited outside, went on: "We are and always will be convinced that despite his desperate problems his life is worthwhile and is worth preserving as long as it is possible to do so without causing him undue pain.
"That was the real argument between us and the doctors - they think his life is intolerable and that his disability is such that his life has little purpose; but we, along with some of the nurses, believed that he experiences pleasure and that he has long periods where he was relaxed and pain free."
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