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Should Ashley stay a child for ever?

I count my blessings in having two healthy sons and cannot imagine the agony of being the parent of Ashley X, having to make those tortuous decisions about her future – followed by public condemnation.

Ashley, who has a severe brain impairment, was given radical treatment three years ago at the age of six to stunt her growth, she will remain a child for ever.

She had started to display signs of puberty and was expected to have a large chest. Following consent from the ethics committee at Seattle Children’s Hospital, Ashley, who has static encephalopathy, was steralised and her breast glands were removed.

Her parents, who have two other children, believe this will improve her quality of life, that by remaining a child, she will avoid suffering conditions like bed sores and pneumonia, as well as avoiding fibrocystic growth and breath cancer, and protect her from the risk of potential sexual abuse.

Ashley’s doctors believe that the controversial treatment has removed one of the major obstacles to family care, possibly extending the time that parents with the ability, resources and inclination to care for their child at home might be able to do so.

However, critics accused doctors and the parents of creating a 21st century Frankenstein’s monster, of maiming a child for the sake of convenience. They described it as “offensive, if not perverse” and “truly a milestone in our convenience -minded society”.

Ashley’s father, while remaining anonymous, posted a 9,000 world blog entry at 11pm on New Year’s Day to justify his decision saying:

‚ÄúSome question how God might view this treatment. The God we know wants Ashley to have a good quality of life and wants her parents to be diligent about using every resource at their disposal . . . to maximise her quality of life.”

I believe it takes courage for parents to make these far reaching decisions and am confident they had their daughter’s best interests at heart. To know that your child will never grow into a woman must be devastating for them, it must have been a momentous decision. I believe it is this aspect that critics find so uncomfortable, to know that nature can be controlled this way. It is certainly macabre to know she has been frozen in time. Can you imagine your child never growing up?

I’m sure it’s not a choice any of us would have wanted to make, it was a courageous one made by the parents for their reasons which was backed by a hospital ethics committee. We should support them. How would you have felt in their shoes? Do you feel they made their choice out of convenience, or for the child’s best interest?

Now here’s a challenge, can anyone locate the father’s blog so I can post a comment?

Update: Thanks to Heather Yaxley and Louise for the prompt link to Ashley’s moving story and pics via her parent’s blog.

Update: 5 January, 2206: I am quoted by USA Today!



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