A Waikato family has used hormones to deliberately stunt the growth of their disabled daughter and keep her child-sized forever.

At 10 years old, Charley Hooper cannot walk or talk, and will remain 1.3m tall, and 24kgs for the rest of her life.

Charley is severely disabled - she has very poor vision, her limbs are uncontrollable and her floppy head needs supporting, her brain is believed to function at the level of a newborn's.



Parents Jenn and Mark Hooper feared as she grew bigger with age, they would no longer be able to take her places and needed a solution.



They stumbled upon the controversial treatment of giving her hormones to stunt her growth.

FIRDIA LINSAWATI / AP The Hooper family say they can take holidays, like this one to Bali, because Charley's growth has been limited

Denied ethical clearance to begin the treatment in New Zealand, the couple journeyed to South Korea where the hormones were administered.

They were then able to continue the treatment at home.



Jenn Hooper considers her daughter so severely disabled, she is "unabled" and reasoned that she would never be able to give consent to have sex, let alone get pregnant, so a hysterectomy was undertaken.



"We haven't stopped her doing anything. Growing would have stopped her doing things," Jenn said.



"We didn't take away any choices that weren't already taken from her."

Without the ability to speak, or give consent, they have always had to imagine what their daughter would want, Jenn said.

FIRDIA LINSAWATI / AP Charley has to be carried everywhere, which would have been impossible if she was allowed to grow, the family say.

They try to judge Charley's feelings, moods and physical needs through her moans. The volume and pitch, as well as whether her face is relaxed or contorted from intense muscle contractions is her way of expressing herself.

On hormone treatment, it took 4 years for Charley to stop growing. Within days after the treatment, Charleys seizures stopped, and her stiff uncontrollable limbs became more pliable. Doctors hypothesise that it could be from estrogen, which can change neurological activity and relax muscles.



Across the United States and Europe, families are turning to growth attenuation to try and improve the lives of their disabled children. Highly controversial, many view the idea of stunting and sterilising their growth intentionally as a violation of human rights. Some doctors also refuse to prescribe the invasive and unnecessary treatment.



Margaret Nygren, chief executive of the American Association on Intellectual and Developmental, said people were entitled to grow and become the people they were meant to be.

``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?" Nygren asked.

FIRDIA LINSAWATI / AP The Hoopers in Bali.

Growth attenuation, the correct term for the hormone treatment has been around since the 1950s. In the past it was prescribed to girls expected to grow very tall. In 2006 however, the first known case of using it to stunt a disabled child's growth was found in a medical journal.

In Seattle, a couple wanted to improve their disabled daughter's quality of life and keep her small enough to participate in family activities. Doctors then distributed high doses of hormones, pushing her body into early puberty and stunting her growth. To prevent discomfort, they removed her uterus and breast buds.

Doctors are now receiving more requests for growth attenuation. A survey by the US Pediatric Endocrine Society found in America, 32 out of 284 respondents have prescribed growth-stunting hormones to at least one disabled child.

Parents like the Hoopers say it helps to preserve the quality of life for that child.

The Hoopers said it would be impossible for Charley to join them on family trips to the mall, and vacations to Bali like she does today, without hormone treatment.

If she was bigger, they would not be able to soothe her by cuddling her in their laps, and carrying 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?"

So we give her the best life we can while we've got her," Jenn said.