Protecting the right to grow up

Protecting the right to grow up

28 October 2015

Media release

IHC supports Disability Rights Commissioner, Paul Gibson's, call for law change.

IHC has serious concerns about growth attenuation – the process of stunting the growth of children with disabilities.

Charley’s story has been in the media again today. She has completed a treatment that means she will now not go through puberty and will reportedly remain at a little over a metre tall, weighing in at 23 kg.

It has also been reported that her parents appealed for her to be given the treatment in New Zealand, but that was declined by the ethics committee. They subsequently went overseas to begin the treatment – once it was begun medical professionals had little option but to complete it here in New Zealand.

“This is an incredibly complicated case,” says IHC Director of Advocacy Trish Grant. “There is huge public sympathy for this family’s situation which we understand, however, we must pause to think about what this means for disabled children’s human rights.”

“This shows that as a society we are failing to provide people with disabilities and their families the support they need on a day to day basis.”

“We have to protect the rights of our most vulnerable – and we have to support families properly so that they aren’t pushed to take such drastic decisions that can never be undone.”

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