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Thursday, April 22, 1999 Published at 17:38 GMT 18:38 UK


Health

Powerful reaction to right-to-life ruling

Rhys and Charly had a rare genetic disorder

A parent whose two children died of a rare genetic disorder spoke of the heart-breaking choices that confront parents in the cases such as that of David Glass.


[ image:  ]
Doctors wanted to let 12-year-old David, who is severely disabled, die with dignity, but 15 members of his family entered his ward and resuscitated him themselves.

His mother, Carol lost a High Court battle to prevent doctors denying David life-saving treatment in future on Thursday.

Doctors and campaign groups have also been quick to react to the ruling.

Genetic disorder

Barry Daniels' children Rhys and Charly died from Batten's Disease, a rare genetic disorder.


[ image: Charly died soon after her brother]
Charly died soon after her brother
Mr Daniels and his wife Carmen fought in the High Court to allow Rhys to have a bone marrow transplant that they believed could cure him of the disease.

Batten's disease causes blindness, dementia and immobility.

Rhys died aged seven in December 1998, despite two transplants. Charly died six weeks later aged nine.

Their parents had decided in 1997 that, after years of treatment, they would allow the children to die when they were next faced with a life threatening infection.

Mr Daniels said: "I completely sympathise with the mother of the boy in this case.


[ image: Barry and Carmen Daniels described their
Barry and Carmen Daniels described their "agonising decisions"
"We have been there with both our children and it is the most agonising and heartbreaking decisions you have to make as a parent and it is difficult for people on the outside to understand.

"It is a very, very personal decision and doctors have to listen to the parents' views.

"When you have very sick children like us, it is not like a car accident where you are making a sudden decision.

"You have years to think about it and you accumulate a lot of knowledge about the condition and what the doctors are doing and what is happening to your child.

"I am disappointed that the court today did not make it clear that parents should have the right to keep their child alive if that is what they want.

"This leaves families with no way out. They should not have to go to court over these decisions."

Considered decisions


[ image: Dr Michael Wilks:
Dr Michael Wilks: "Every effort must be made to find a consensus"
The British Medical Association said doctors gave such decisions about life prolonging treatment for dying children careful consideration.

Dr Michael Wilks, chairman of the BMA's ethics committee, said: "A judgement has to be made about whether treatment is is in the best interests of the patient or whether the burdens outweigh the benefits."

However, he agreed with the judge's suggestion that hospitals could bring cases to court when there is dispute.

He said: "In these circumstances every effort needs to be made to achieve a consensus on the best way forward.

"If this proves impossible, the BMA recommends doctors seek further advice, and this may well include reference to the court."

'Parents get the full picture'


[ image:  ]
Commenting on the case, Mencap said Mrs Glass was not the first and would not be the last parent to face agonising decisions about a child's care.

Mencap campaigns for and with people with learning disabilities.

Brian McGinnis, a special adviser to the charity, said: "Parents see 24-hour reality of a severely disabled child who has good times and bad times.

"Hospital staff see the child at a point in time - commonly a low point - and are less aware of the person behind the disability than the parents are.

"Parenting is about a relationship, and the voice of those who have that relationship must be heard."

'Law missed an opportunity'

Bruno Quintavalle, director of the anti-euthanasia group Pro-Life Alliance, said: "The judge today had a most important opportunity to clear up the law on a matter of great public importance.

"We want to ensure that the euthanasia issue will be heard in the courts and are sorry that this was not the time that is was satisfactorily resolved.

"Doctors are taking greater and greater liberties to the detriment of their patients and some sort of judicial control is needed."



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Health Contents

Background Briefings
Medical notes

Relevant Stories

23 Apr 99 | Health
Ruling fails to settle end-of-life issues

22 Apr 99 | Health
Mother loses right-to-life court battle

22 Apr 99 | Health
Mother's court battle for son's life

10 Feb 99 | Health
Batten's disease claims Rhys's sister

24 Dec 98 | Health
Tears and tributes for brave Rhys

23 Dec 98 | Health
Brave fight ends for Rhys, 7





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