In terms of prevention, there is not enough intensive support provided to continue a child's oral skills and intake before the decision to insert a tube is made. Did the child really need a Nasal Gastric tube for weight gain or reflux, when intensive expert feeding support may have been enough? A simple example, but one that could have possibly averted our personal experience with FTD. Our son has 3 years of physical and psychological trauma to recover from, and significant global developmental delay that we are working tirelessly to reverse.

Tube Feeding can hinder oral motor development, which is an extremely important part of a child's overall development, especially speech. Early intervention is obviously best when approaching tube weaning. But it is entirely possible to wean children of all ages.

I am a mother of a former tube-fed child. For two and a half years I felt totally alone and completely isolated. I live in a capital city and have access to one of Australia's best children's hospitals. I didn't know any other children with Feeding Tubes. Since returning from Graz I now have privileged contact with families in Australia and around the world, through a networking support website I created called ‘Tube Fed Kids - Deserve to Eat' (www.tubefedkids.ning.com).
There is an answer for this group of forgotten children. We need to embrace the Graz Model, its principles and start working towards achieving a better quality of life, for part and full-dependant children. We must enable them to experience one of life's most basic necessities' and the simple pleasure of eating and drinking (sooner rather than later).
I am working to lobby the Federal Government (and anyone else who will listen) to raise awareness about FTD in Australia. As a busy mother who is not able to return to paid work due to the special needs of my youngest child, I am now a passionate advocate for other children. I am desperate to make sure others do not experience the years of relentless stress we did.
I would be very pleased to hear from anyone who may be able to help this cause.