The BBC Website today has an interesting article about a young American girl, her chronic disease, and the controversial treatments her parents are undertaking to ease her future suffering. The girl, Ashley, suffers from static encephalopathy, which leaves her with "the mental ability of a three-month-old baby and cannot walk or talk."
Her condition will not improve and she will require personal care for the rest of her life. To help deal with the condition, her parents have treated her "with hormone doses to limit her growth, . . . [and] surgery to block breast growth and had her uterus and appendix removed." The rationale:
Ashley's parents say that because she will remain the weight of a child, it will be easier for them to move her around, bathe her and involve her in family activities - movement that will benefit her physical and mental well-being.Not surprisingly, the treatments have caused controversy on both sides of the Atlantic. You can read more about the situation at this blog run by her parents.
2 comments:
This post makes me think of your Gattaca post from last month. It's a good question and a good issue to think about in terms of what type of society that we want to be. Once again, the stuff of sci-fi.
I have only a shred of understanding for Ashley's parents. Sure, maybe she'll live a little easier this way, but facing challenges is part of being human, for her and her parents. And who knows what advances will come about in her lifetime that could improve her mentally and physically, and yet she is forevermore trapped in a 9-year-old's body and sterilized, eugenics-style, simply because they didn't want her to suffer the mildness of menstruation (unlike every other woman in the world between ages 12 and 60!). Her breasts were removed for mere convenience, and her appendix was removed "just in case." This is nothing short of child abuse.
For more comments, please visit my blog post on this:
http://angrylabrat.blogspot.com/2007/01/forever-young.html
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