'Our daughter was diagnosed with a rare genetic disease. This is our life now.'

 

Published on Mamamia

February 28, 2022

As a mum, how do you grapple news like that?      

“I don’t think you ever do, to be honest. You learn to live with it a little easier. You learn to function a little bit better everyday.”

There are many ups and downs to Amanda Gilpin’s days, and this week has been “a really s****y one”, she tells Mamamia. 

Even though we talk over Zoom, I can feel it weighing on her. Behind Amanda’s kind smile, and occasional laugh, her eyes are heavy and glassy, and her face, taut with strain. 

This is the face of a mum whose child has been diagnosed with Childhood Dementia. 

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