Should parents stop their very disabled children from growing up Father sparks debate about treatment that could spread to UK
15:38 GMT, 16 March 2012
At least a dozen families with severely disabled children have decided to put them through a controversial therapy to stop them growing into adults, according to reports.
Known as the 'Ashley treatment', it is named after a girl from Seattle who underwent a series of procedures between 2004 and 2006 to keep her in a child-like state.
Ashley, pictured on her parent's blog pillowangel.org, was given hormones to stunt her growth as well as a hysterectomy
Five years on her father is convinced the treatment has improved his daughter's life and says he knows of at least a dozen other parents who have followed a similar course.
However, disability rights campaigners say it is a violation of the disabled person's civil rights.
Ashley's father, who wishes to maintain the family's anonymity, told The Guardian: 'The Ashley treatment has made her far more likely to be comfortable, healthy and happy
'Given the limitations imposed by her medical condition, her life is as good
as we can possibly make it.'
It is thought as many as 100 families from the U.S,
Europe and beyond have carried out or are planning of carrying out
similar medical therapies.
Ashley, now 15, has severe developmental disabilities and will always have an infant mental state. She cannot talk and must be fed by a tube but can respond to others by vocalising and smiling.
As she approached puberty her parents became worried about how they would cope with caring for her. They decided to embark on a drastic series of 'growth attenuation' treatments that would stop this process while also limiting her size.
She underwent estrogen therapy that limited her height – by 2010 she measured 4ft 4″, which is about a foot shorter than an average 13-year-old girl.
She also underwent a hysterectomy and had both breast buds removed at Seattle Children's hospital.
Ashley's parents argue that the treatment improved her quality of life and saved her from much discomfort, such as from menstrual cramps. It also meant it was easier for them to help and handle her.
However, critics said that the treatment breached Ashley's human rights and doctors had thought more about the parents' needs than their daughter's.
Curt Decker, director of The National Disability Rights Network in the U.S, said his group will publish a report in April that will call on US Congress to ban growth attenuation treatment for disabled children.
'Parents have rationalised that this is an OK thing to do but it treats people as though they have no worth and that's a slippery slope,' he told The Guardian.
Mr Decker believes thousands of families are exploring the Ashley treatment.
'This is a violation of the civil rights of individuals and should be prohibited,' he said.
However, Ashley's father said this would deprive severely disabled children leaving treatment available only to the 'wealthy and powerful.'