Ted’s our little hero – he’s so special (says mum Zoe). On the darkest of days, when you’re sat in intensive care with him, he’ll look at you as if to say, ‘I’m okay, Mum. We can do this.’ He’s got an inner strength which has taught Sven and me so much. We’re definitely more resilient and grateful for everything because of him.
I knew something was wrong soon after Ted was born – it was a mother’s instinct. But it took 18 long months for him to be diagnosed. He has an incredibly rare and terminal condition called Aromatic Amino Acid Decarboxylase Deficiency, which is like a childhood Parkinson’s disease. He’s one of five children in the UK to have it and there’s only around 150 children with the condition worldwide.
