Jenn, left, and Mark Hooper sit for a photo with their three children, from left, Cody, Zak and Charley in Bali.
Photo: AP
[From article]
Charley Hooper is so disabled that her mother considers her “unabled.”
At 10, she cannot speak, walk or see anything beyond light and dark and perhaps the shadowy shape of a face held inches away. As she grew bigger, her parents feared she would eventually become too heavy to take anywhere.
So Jenn and Mark Hooper came up with a radical solution. The New Zealand couple gave their daughter hormones to stop her growth. Then they had doctors remove her womb to spare her the pain of menstruation. Charley is now around 4 foot 3 and 53 pounds, and will remain so for the rest of her life.
A small but increasing number of families across the US, Europe and New Zealand are turning to what is known as growth attenuation in an attempt to improve the lives of their disabled children. The practice is highly controversial: Many see the very idea of stunting and sterilizing the disabled as a violation of human rights. But parents such as the Hoopers say it helps their children preserve their quality of life.
[. . .]
Mark Hooper carries his daughter Charley in Bali.
Photo: AP
“People are really entitled to grow and to become the people they were meant to be,” says Margaret Nygren, CEO of the American Association on Intellectual and Developmental Disabilities. “Would you ever want this kind of treatment done to you without your consent or knowledge? And if the answer is no, then why would one want to do that to someone else?”
Yet for Charley’s parents, that question is moot, because they have never been able to ask for her consent on anything. They have always had to imagine what their daughter would want.
Charley is a jumble of uncontrolled limbs with a floppy head that needs supporting. Her parents try to interpret what she feels by the pitch and volume of her moans, and whether her freckled face is relaxed or contorted in a gaping yawn because of intense muscle contractions. The warm sun on her skin can trigger a smile, but is it a sign of joy or a reflex?
[. . .]
Today, Charley joins her family on trips to the mall and vacations to Bali. Her parents soothe her by cuddling her in their laps and carrying her in their arms. None of that would be possible, they say, if she was bigger.
[. . .]
“We don’t expect her to live forever. We don’t want her to live forever. Who wants this life forever?” Jenn says. “So we give her the best life we can while we’ve got her.”
http://nypost.com/2015/10/26/parents-stunt-disabled-daughters-growth-in-controversial-treatment/
Parents stunt disabled daughter’s growth in controversial treatment
By Associated Press
New York Post
October 26, 2015 | 10:40am
“People are really entitled to grow and to become the people they were meant to be,” says Margaret Nygren, CEO of the American Association on Intellectual and Developmental Disabilities. “Would you ever want this kind of treatment done to you without your consent or knowledge? And if the answer is no, then why would one want to do that to someone else?”
Yet for Charley’s parents, that question is moot, because they have never been able to ask for her consent on anything. They have always had to imagine what their daughter would want.
Charley is a jumble of uncontrolled limbs with a floppy head that needs supporting. Her parents try to interpret what she feels by the pitch and volume of her moans, and whether her freckled face is relaxed or contorted in a gaping yawn because of intense muscle contractions. The warm sun on her skin can trigger a smile, but is it a sign of joy or a reflex?
[. . .]
Today, Charley joins her family on trips to the mall and vacations to Bali. Her parents soothe her by cuddling her in their laps and carrying her in their arms. None of that would be possible, they say, if she was bigger.
[. . .]
“We don’t expect her to live forever. We don’t want her to live forever. Who wants this life forever?” Jenn says. “So we give her the best life we can while we’ve got her.”
Parents stunt disabled daughter’s growth in controversial treatment
By Associated Press
New York Post
October 26, 2015 | 10:40am
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