Little Owen McCulloch doesn’t realise how fragile he is – that just one hot day in his home state of Queensland could kill him.
But the cute seven-year-old says despite suffering ectodermal dysplasia, a rare genetic disorder that’s robbed him of the ability to naturally cool his body, he wants to be treated like a normal kid.
‘It’s really hard to pronounce, isn’t it?!’ he says of his condition. ‘It means I’ll never sweat and have funny teeth and other stuff. But it’s cool – I like being me!’
Owen’s parents Victoria and Garth and his brother Jack, five, regard him as their ‘special boy’.
‘Because he can’t sweat, he could potentially overheat and die,’ says Victoria, 34, who monitors her son’s temperature and condition 24 hours a day.
‘It’s hard to not be over-protective.’
But with the loving support of his family, friends and school, Owen feels just like other kids.
‘Owen loves the outdoors, so to keep cool he wears an ice vest when running and playing with his friends,’ explains Garth, 35.
‘He wears an ice neck-tie and ice gel inserts for his hat.’
And Owen has his own ways of managing his disorder. ‘When I get really hot I just go to the fridge and eat watermelon – and I love ice-blocks,’ he giggles.
One effect of Owen’s condition is that he has to wear dentures – getting an expensive set of proper teeth is, Garth explains, in the hands of the bureaucrats.
‘We’re lobbying for his implants to not be regarded as cosmetic. It beggars belief that our son’s condition is not recognised – as though he doesn’t do it tough enough,’ Garth says.
But Victoria says nothing fazes Owen, smiling as she recalls a friend’s comment.
‘She said Owen is an old soul, like he’s been here before. I believe that because nothing rocks him. He cops it all on the chin and shakes off the taunts. It’s more than I could bare.’
In fact, Owen thinks he’s the luckiest boy alive. ‘If I get bullied I just laugh and run off and play with someone else!’ he smiles.
‘I’ve got nothing to be sad about. We call it counting blessings – I had to stop counting at almost one million!’Photos: Tertius Pickard