1 in 15,000: Dangerous disorder a battle for family 08 Feb

1 in 15,000: Dangerous disorder a battle for family

FOR Warwick mum Brooke Dwan, controlling her two young daughters’ diets is a daily balancing act which, if mismanaged, could have devastating consequences.

Willow, 5, and Kennedy, 2, were both born with Phenylketonuria (PKU), a disorder that means too much protein could lead to irreversible brain damage.

Only 1 in 15,000 children across Australia and New Zealand are born with the disorder and both parents must carry the faulty gene in order for it to be passed on.

For Mrs Dwan, dealing with PKU means constant monitoring of her daughters’ diets, right down to every gram of protein they eat.

“Quite simply, they can’t eat meat, milk, beans, legumes, nuts, cheese, eggs and many other foods the rest of us take for granted,” she said.

“The most protein they can have is eight grams a day each: Any more could be dangerous.”

One egg is equal to around seven grams of protein, a glass of milk is equal to about eight grams.


“Much of the children’s food needs to be bought online, special formulas and rice, egg or meat substitutes that are medically formulated and shipped to Australia from such countries as the US.


“It’s still important they have some protein but it’s heavily restricted,” Mrs Dwan said.

“They have special supplement drinks they need to have three times a day, just to ensure those critical levels are balanced.

“This will be a lifelong issue for my girls but we’re all learning more and more about it and they’re both beginning to understand what they can and can’t do and their responsibilities. It is so great to see.”

Mrs Dwan said she was initially devastated upon hearing the diagnosis of not one but both daughters.

“It was a real shock at first, not knowing anything about it but it’s life for us now,” she said.

This weekend Mrs Dwan will tackle the Great Protein Challenge, an incentive launched by the Metabolic Dietary Disorders Association (MDDA).

“It’s chance to raise some awareness about PKU, hopefully raise some money for further research and put myself in my daughters’ shoes for one day,” she said.

“I will try to eat less than 10 grams of protein, which will be a huge challenge for me, who isn’t used to having to watch what I eat.”

To donate, to get involved or to find out more about PKU, head to www.mdda or