A daily battle – by mum, Karen

Josselin doesn’t understand that she needs to close her eyes and go to sleep. She can be awake constantly for three days and three nights and just keep going. And when she’s awake, I’m awake too. It’s exhausting.

Joss was six months old when she was diagnosed with CHARGE syndrome. By then I was just relieved to have the diagnosis. All children are affected differently with her condition, but for Joss it’s very severe. The doctors would say, ‘we’ve never seen a child like Josselin before’. She’s profoundly deaf and registered blind. She has trouble swallowing so she’s tube fed. And she doesn’t walk or talk, or have any formal kind of communication like sign language.