Watching what he eats … Zoe Mitter with her son Cayden, 2, who has PKU.At just over two years old, Cayden Mitter is like any other child his age. He loves planes and cars, can recognise 22 letters from the alphabet and is pretty sure the word ”please” has magical properties.
To look at him, Cayden is normal in every way.
Except protein could kill him.
The Mitters are one of about 700 Australian families living with a loved one who has a metabolic dietary disorder; essentially, inborn errors that stop the body from being able to process either fats, carbohydrates or protein or, in the unluckiest of cases, a combination.
In Queensland, it is estimated that just seven babies are born with a metabolic disorder each year.
Phenylketonuria or PKU, the inability to process protein, is the most common metabolic disorder, ”the one you want if you have to have one”, Cayden’s mother Zoe explained.
Each mouthful of food that passes through her son’s lips must be monitored. Considered ”high tolerance”, Cayden can have 12 grams of protein a day, which means he can still indulge in the odd marshmallow or biscuit for a snack and is able to eat normal rice.
But breads, cereals and anything derived from an animal is out for the rest of Cayden’s life.
Any more than 12 grams, or ”points” as is the measurement the Mitter family use, and Cayden will lose the ability to think clearly and be unable to concentrate.
Prolonged exposure will lead to brain damage and eventual death. Those who have been diagnosed later in life rarely live beyond 50.
”We found out about it after we had the heel prick test done when Cayden was born,” Mrs Mitter said.
”It’s not a mandatory test but we are so thankful we had it done. We were able to get Cayden started on his special diet and program as an infant. The damage that can be done to the brain is irreversible.”
Both Mrs Mitter and her husband Otto, carried the defective half of the gene that causes PKU.
The Gold Coast couple have been told they have a one in four chance of having a second child with the disorder. ”We do know families who have two and even three children with PKU or another metabolic disorder,” Mrs Mitter said.
”I have no idea how they do it. It can be mind-boggling hard.”
Cayden’s ”special food” is expensive and difficult to source, with most not meeting Australia’s strict customs regulations.
But Cayden must eat a certain amount of protein each day to aid his growth and development, even when sick.
”Those are the most stressful times. When he doesn’t want to eat. He has to eat. We don’t have a choice,” Mrs Mitter said.
”But trying to convince a sick or grizzly toddler to eat is a challenge at the best of times. When their development counts on it, let’s just say you have extra motivation to keep offering that spoon or bottle.”
The Mitters have just cleared the first hurdle in Cayden’s development, finding a kindergarten they can trust.
”I was tearing my hair out, thinking about kindy and the food sharing which happens between kids,” Mrs Mitter said.
”We have been really lucky in that the one we found understands and have been amazing. They keep his food completely separate and have a no food sharing rule. But they include him in everything as well, so he doesn’t feel left out. If there is cake, they tell me so I can make him a special cupcake and they put it on the same plate.
”But as he gets older, it gets harder. Next is school and then as a teenager … it is hard to understand unless you are living it. But it is not a case of because he can have a little bit of protein, it’s OK. This is something he has to live with for the rest of his life.”
The Mitters were directed to the Metabolic Dietary Disorders Association by their nutritionist, which Mrs Mitter called ”an absolute lifesaver”.
The not-for-profit organisation provides support, recipes and advice for parents navigating their children through metabolic minefields.
”No one knows what PKU or any of the other disorders are. Otto and I had no idea what it was when the doctor told us. Without the MDDA, we would be completely lost.”
In an effort to give back to the foundation and raise awareness of metabolic disorders within the general community ”so waiters don’t just think we are being overly picky and people understand why I won’t let my son have a sausage at a barbecue”, Mrs Mitter has organised a Christmas in July fund-raiser.
”It’s not a food allergy. It’s not us being hypersensitive. It is about our son’s quality of life. If more people could become aware that these disorders exist and if we could raise funds for the organisation which guides so many of us through it at the same time, then I would feel that we have achieved something.”
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