This is a story about a girl who will never grow up. Nine-year-old Ashley, who has severe brain damage, has an undiminished life expectancy. But with the use of hormones, her parents have ensured that she remains child-sized, forever.
The Seattle-born girl is described by her parents as their Pillow Angel because she stays where they place her - most usually on a pillow. The rare brain condition known as static encephalopathy that she suffers from means she cannot sit or talk and is fed by tube.
Three years ago, her parents observed early signs of puberty and became concerned that she would become too large to lift or move - meaning that they would not be able to look after her.
After consulting with doctors, Ashley was given a hysterectomy, surgery to prevent breast growth and high doses of oestrogen that have frozen her body at its current height, four foot and five inches. The treatment, known as growth attenuation, is expected to keep her weight at about five stones for the duration of her life.
It is believed to be the first time that the growth of a profoundly disabled person has been deliberately inhibited, and the ethics surrounding the treatment for disabled children had never been discussed in mainstream medicine until Ashley's treatment was revealed in the journal Archives of Paediatrics and Adolescent Medicine in October.
This week, her parents, who wish to remain anonymous, defended their actions against critics who have suggested that they chose to inhibit Ashley's growth for their own "convenience".
"We will continue to delight in holding her in our arms," they said. "Ashley will be moved and taken on trips more frequently and will have more exposure to activities and social gatherings... instead of lying down in her bed staring at the TV (or the ceiling) all day long."
The treatment, which took place at Seattle Children's Hospital, had been described as "ill-advised" by Jeffrey Brosco, a paediatrician at the University of Miami, in a co-written editorial, though he applauded doctors for publishing the case and helping to "advance our ethical dialogue" on the topic. Comments on chatboards have included, "Ouch-this smacks of eugenics" and "I find this offensive, truly a milestone in our convenience society".
Ashley's parents remain adamant that their decision was for her own interests. Their daughter, who goes to a school for the severely disabled, is alert and aware of her environment and loves music, they said.
But they said: "Ashley was dealt a challenging life and the least that we could do as her caregivers is to be diligent about maximising her quality of life."Reuse content