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'How can they mutilate Ashley?'
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05 January 2007
The severely disabled American girl, known only as Ashley X, suffers from static encephalopathy, which means she has the mind of a three-month-old baby and cannot walk, talk or hold her head up, and needs to be fed through a tube.
She has had her womb and breasts removed and hormone treatment to freeze her development so that her parents can continue to care for her at home.
Their decision has sparked a debate in both the US and in Britain, with experts claiming the stunting of the girl's growth was an abuse of the child's rights.
Ashley's parents say if she remains the weight of a child, it will be easier for them to move her around and bathe her, which is movement beneficial to her physical and mental well-being.
Doctors from the University of Washington in Seattle gave the ethical goahead for the treatment last year but disabled groups and parents of children with similar conditions have gone online to object to the decision.
Richard Parnell, of UK charity scope Scope, which focuses on care for people with cerebral palsy, said many British parents of children with conditions similar to Ashley's would be "appalled".
"We hope any such request for this kind of treatment would go to a court because it is an abuse of the child's human rights," he said.
Agnes Fletcher of the UK's Disability Rights Commission said: "It was unnecessary medical treatment to deal with what is essentially a social problem."
Henrietta Spink, 44, from Cornwall, who has two disabled children herself, said: "I know you shouldn't judge other people, but everything in me says what they've done is completely and utterly wrong. It seems a cosmetic decision."
Professor Raanan Gillon, a leading ethicist at Imperial College London, said: "My immediate response was shock, horror and disgust. "How could a child be mutilated in this way? But on reflecting, it seemed to me there were some reasons in favour."
However, dozens of supportive comments have been posted on the parents' website. Ashley's parents, who describe themselves as college-educated professionals-from Seattle, gave their reasons for seeking the treatment in a 4,000-word blog: "Unless you are living the experience, you are speculating and you have no clue what it is like to be the bedridden child or their care-givers.
"Ashley was dealt a challenging life and the least that we could do... is to be diligent about maximising her quality of life."
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