bulletEdwards syndrome is a chromosome abnormality also known as Trisomy 18.  Mother of Nine-month-old Luke Winston-Jones, from Holyhead, north Wales, has been told told the treatment he has been receiving may abruptly end.  



Anguish over right-to-live baby case  

A hospital said today it may go to the High Court to determine the fate of a seriously ill baby.

Nine-month-old Luke Winston-Jones, from Holyhead, north Wales, was given only days to live after he was diagnosed shortly after birth with the genetic disorder Edwards syndrome.

For most of his life he has been treated at Gwynedd Hospital, in Bangor, north Wales, but he was recently transferred to Alder Hey Children's Hospital in Liverpool.

Now health chiefs are considering whether to apply to the High Court for a ruling on whether they must continue to treat Luke.

Earlier this year Luke's mother Ruth Winston-Jones, 35, was faced with a similar ordeal after bosses at Gwynedd Hospital threatened to take the case to the High Court before withdrawing their application at the last minute.

The latest news comes only days after a judge ruled that baby Charlotte Wyatt could be allowed to die in a similar case.

A spokeswoman for Alder Hey said they were seeking further specialist opinion and a decision on whether to make an application to the High Court would be made in the next 48 hours.

She added: "Luke is a patient currently receiving treatment at the Royal Liverpool Children's Trust for a very rare and complex illness - Edwards syndrome.

"Doctors and nurses at the trust have explained to his parents the extremely poor outlook for Luke.

"The trust has already sought expert clinical advice from other major children's hospitals and is today obtaining a further specialist opinion.

"Rare cases such as this present a real ethical dilemma. Where there is a significant difference of opinion between paediatric medical specialists and parents, it may be necessary to put all the facts before a court for proper and impartial consideration.

"This is a difficult time for Luke's family and the doctors and nurses who are treating him. The trust is actively supporting the parents and will be reviewing the position carefully over the next 48 hours."

Ms Winston-Jones, who is separated from her husband and has two other children - Andrew, 12 and Sophie, seven - describes her son as "a little fighter" and says she will not give up on him.

Luke's aunt Jacqui Kirkwood said her sister was distraught at the latest turn of events.

She said: "There is now a death sentence hanging over this little baby who has proved himself a fighter.

"As a family we feel this is a complete act of betrayal by the medics responsible for looking after Luke.

"This is the second time we have faced this death sentence and Ruth is taking it very badly.

"She just wants to be with her son and is too scared to leave him on his own. She does not feel she can trust anybody.

"We will fight this every step of the way."

Edwards syndrome is a chromosome abnormality also known as Trisomy 18. Babies born with the disease have an average lifespan of under two months with less than 10% surviving more than a year.

Sufferers appear thin and frail, they fail to grow properly and have difficulty feeding.

An appeal fund, which is supported by the Duchess of York, has been set up to fund Luke's care.

Anybody who wishes to help should contact their local HSBC branch and ask to make a donation to the Baby Luke Winston-Jones appeal fund.


Source: http://icwales.icnetwork.co.uk/0100news/0200wales/tm_objectid=14747536&method=full&siteid=50082&headline=anguish-over-right-to-live-baby-case-name_page.html



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