Charley Hooper will be 4 feet, 3 inches tall and 53 pounds for the rest of her life

By Andrea Park
October 30, 2015 02:25 PM
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Imagine staying the size of your 10-year-old self for the rest of your life. For Charley Hooper, that’s her reality.

But Charley isn’t your average 10 year old.

After being deprived of enough oxygen during a botched birth, she was left with a massive, irreversible brain injury. She also suffers from epilepsy, cerebral palsy, scoliosis and microcephaly, her mother has written. Jenn Hooper, 44, says her daughter is so severely disabled that she can’t walk, talk, see, sit or stand – she can’t even chew her meals.

Because of the severity of her disabilities, Hooper’s parents decided to deliberately stop her growth. This process, called growth attenuation, is extremely rare and highly controversial, but the New Zealand couple fought to find a way to give their daughter the necessary hormones to halt her growth.

After a local ethics board in New Zealand dismissed the treatment, the couple found a doctor in South Korea who gave them the hormones. The board then agreed to continue Charley’s treatment at home.

“We had an inkling of what life would be like for her,” Jenn told The Washington Post. “I thought: If I was stuck in a newborn baby’s body, what would I prefer? Would I prefer to be hoisted or would I prefer to be held and comforted and carried? It came down to two questions: Is there anything she would gain by being allowed to grow big, or is there anything she would lose by being allowed to stay smaller?”

The answer to both questions, Jenn says, was no, so she and her husband decided to give their daughter hormones to stop her growth and to remove her uterus to “spare her the pain of menstruation,” according to the Associated Press. Hooper will remain 4 feet, 3 inches tall and 53 pounds for the rest of her life.

“We haven’t stopped her doing anything. Growing would have stopped her doing things,” Jenn told the AP. “We didn’t take away any choices that weren’t already taken from her.”

After Hooper was born “dark gray in color, floppy and making gasping movements” in 2005, according to a report from New Zealand’s Health and Disability Commissioner, it was determined that the midwives who delivered her did not resuscitate her correctly. Now, Hooper cannot speak, walk or see anything besides light and dark. Because she can’t chew food, she pushes her meals down her throat with her tongue, a process that can take up six to eight hours of each day.

“She puts up with a lot. By God, she’s got a hard life,” Jenn told the Post. “It’s not fun to be Charley a lot of the time.”

The hormone treatments began when Hooper was just a few years old, and she underwent her hysterectomy at the age of 7. Within days of starting the hormone treatments, Hooper’s seizures stopped and her limbs, usually stiff, became more pliable. Her parents say that if she were any bigger, they wouldn’t be able to effectively soothe their daughter by cuddling her and holding her in their arms.

“We don’t expect her to live forever. We don’t want her to live forever. Who wants this life forever?” Jenn told the AP. “So we give her the best life we can while we’ve got her.”

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