PKU – What it means for my son

Birthday cake, a hot dog, even a McDonald’s Happy Meal are all off limits to our six-year-old son James.

James doesn’t have food allergies, though. He suffers from PKU, which drastically limits his diet for the rest of his life. PKU means James’ body can’t metabolize phenylalanine, one of the building blocks of protein.

A highly restricted diet keeps him healthy and experts hope dramatic improvements in treatments could become a reality in his lifetime.

James loves football and bowling. He has the trophies and medals to prove it. In practically all respects, he’s a healthy, happy little boy. His strength is an inspiration to me and I’m his mum!!

His favorite food is burgers and chips and nuggets, special meatless versions of course. In all his six years, James has never eaten meat. And every bite of food he eats is extremely low in protein. Every bite is carefully weighed and measured.

I am very stringent, I know I am but you don’t cheat; you really have to stick to the diet every day to maintain his blood levels and healthy functioning all around.

Many of his friends think he has food allergies. Many ask why he needs to weigh everything he eats.

He tells them we weigh them because he’s on a special diet called PKU. ‘What’s PKU?’” is the standard response to this.

Unchecked, PKU could cause severe mental retardation and seizures. A special formula provides all the protein he needs without the one he doesn’t. Of course, this is a bit hard for a six-year-old to explain to other kids!!

There are always events and fundraising functions for people like James, so please get involved if you get the chance and who knows what the future holds!

James isn’t too concerned about the future though. He’s content with the present.