Family suffers

By Callan Date
RAISING three boys under the age of 11 is a tireless job under the best of circumstances.
But for Cranbourne couple Katrina and Frank Zanetti, the challenge is made tougher by the rare genetic condition phenylketonuria (PKU), which affects their two youngest sons.
Gazette readers first learned about the Zanetti family, who then lived in Berwick, in May 2002 when their second son Jack was diagnosed with the condition that one in 10,000 newborn babies have.
Since then Katrina and Frank have welcomed their third son into the world, and like his older brother, 11monthold Matthew also has PKU, an inherited disorder that occurs when both parents pass on a specific gene to their baby.
The condition prevents the body from breaking down protein, which causes a buildup of the amino acid phenylalanine.
A higherthannormal phenylalanine level prevents the brain from developing properly and in turn the sufferer can be intellectually disabled.
“We were told our third child had a 25 per cent chance of having the condition and I personally didn’t think it would happen,” Katrina said.
The couple and their eldest son Peter, 10, were distressed when a heelprick test revealed Matthew was born with PKU, but the anger was shortlived.
“The hospital staff were very reassuring and they told me to think about how good Jack was doing even though he was born with PKU,” Katrina said.
Jack leads an active and full lifestyle for a fouryearold but is severely restricted in what he can eat.
The preschooler isn’t allowed to indulge in the lollies that other young children are treated to, with his diet consisting mainly of fruit, vegetables and specially made food.
Both boys also have a special vitamin supplement that comes in a powdered and gel formula. Unfortunately for the boys, and their mum, the supplement isn’t the most appealing of tastes.
“They need to have it twice a day and they don’t like it at all,” she said.
An imported pasta that Katrina buys and gets sent to their home is one of the more favoured things on the boys’ menu.
“You are constantly reading the back of food labels and doing calculations in your head to find out how much protein they have had for the day,” she said.
One thing that is never easy for Katrina is telling her two youngest children they can’t have any more food.
“Sometimes towards the end of the day they are still hungry but they have eaten all the protein they can for one day, so you just have to say no,” she said.
Another challenging time for the Zanettis is the fortnightly blood tests Jack and Matthew are required to have.
The sight of a needle is disturbing for most people, but for an 11monthold and fouryearold the drama is intensified.
But for all the challenges and drama PKU has brought to Jack, Matthew and the Zanetti household, the family continues to rise above it all.
“It’s amazing. They are such brave boys and apart from their diet, they will lead a full and normal life,” Katrina said.