Frozen in Time: the Disabled Nine-Year-Old Girl Who Will Remain a Child All Her Life

From The Guardian (U.K.):

Ashley's parents call her their Pillow Angel, a moniker that is a reference to the love and joy they feel for their nine-year-old daughter and the severe disabilities she has suffered from birth. She cannot sit up, walk or talk, is fed by tube, and, as her parents put it, "stays right where we place her - usually on a pillow".

Ashley won't know this, as she is brain-damaged and has the awareness, her doctors say, of a baby, but she has become the subject of a passionate argument in disability circles and beyond. Her name is becoming synonymous with the debate about the acceptable limits of medical intervention in the care of disabled people.

The cause of the controversy is the "Ashley Treatment" - a course of surgery and hormone supplements devised for her at her parents' request and with the blessing of doctors - that will for ever keep her small. It involves surgical operations, including a hysterectomy, and hormone prescriptions that will, in effect, freeze-frame her body at its current size.

Although she has a normal life expectancy, she will, physically, always be nine years old. Her growth has been suspended at 4ft 5in (1.3 metres), rather than the 5ft 6in she would probably otherwise have become. Her weight will stick at around 75lb (34kg) rather than 125lb.

This week Ashley's parents, who have chosen to remain anonymous and have only let it be known that they are "college-educated professionals" living in Washington state, have posted on the internet a lengthy explanation of their desire to stunt her growth. It is the first time they have given a public account of their actions. The explanation is accompanied by a gallery of photographs showing Ashley over the years, from her as a smiling baby a few months old, through to today when she is seen nestled in a sheepskin rug.

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