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Resource id #4 Parents keep disabled girl child-sized; ethical debate on across the globe - Volume 5 Issue 2: Disability News and Information Service for India

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Volume 5 Issue 2 - January 15, 2007

Parents keep disabled girl child-sized; ethical debate on across the globe

D.N.I.S. News Network 9-year-old Ashley who has static encephalopathy, a severe brain impairment, has received treatment at Seattle Children’s Hospital for the last few years designed to stunt her growth, outraging doctors and caregivers who feel that such treatment is a violation of a person’s dignity.

Ashley cannot walk or talk. She cannot keep her head up, roll over or sit up by herself. She is fed with a tube. Her parents call her “Pillow Angel” because she stays right where they place her, usually on a pillow. The parents have defended their act as a humane one, expressing their fear that their angel would become too big one day— too big to lift, too big to move, too big to take along on a family outing; that they are keeping her small in order to allow her to receive more care, more interaction with her younger brother and sister, and more of the loving touch of parents and others who can carry her.

This very unusual case has sparked an ethical debate, mainly in the U.S. and around the world. Ashley has received treatment designed to stunt her growth. Known as “growth attenuation”, the treatment is expected to keep Ashley’s height at about 4 feet 5 inches and her weight at about 75 pounds for the rest of her life. The treatment has involved a hysterectomy, removal of the breast buds and daily doses of estrogen. Doctors expect her to have a normal lifespan. Had she not been given the treatment, doctors estimate that she would have grown into a woman of average height and weight - about 5 feet 6 inches and 125 pounds.

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