Mum, Karen’s, daily battle

Josselin was six months old when she was diagnosed with CHARGE syndrome.

“All children are affected differently with her condition, but for Josselin it’s very severe,” says 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 when she’s awake, I’m awake too. It’s exhausting.

“There aren’t many people who will look after Josselin because her behaviour can be challenging,” says Karen. “The only break I get is when she is cared for by Julia’s House.”

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