Member Stories

I was born in December 1958 - a healthy baby but as time went by I was a little slower reaching my milestones, retreating to a world of my own. During my first two years of life mum took me to the GP constantly trying to find our what was going on with me.

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Hello, my name is Harry Grigson; I am 14 years old, I live in Western Australia and was born with PKU. This is my journey of having PKU and how I have grown up with it and coped with battles here and there.

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Hi, my name is Harry Owens, I am 8 years old and I have PKU. I go to school at St Marys Primary School in Crookwell and I am in Year 3.

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My story of the heartbreak, trials and hardships experienced, as the mother of the first diagnosed PKU to attend a normal school in, Sydney, Australia.

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My name is Justine Inglis, I am a 43yrs old with PKU. I was born and raised in New Plymouth, New Zealand - moved to Australia in 2004. I was diagnosed at 5 days old at Taranaki Base Hospital in New Plymouth via the Guthrie Newborn Screening test. My birth PHE level was 1500.

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My name is Raelene Boyle and I have PKU. I am 42 years old and am the only one in my family who has PKU. I have 2 older sisters and they say when I came into the world things changed dramatically.

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Have you ever met someone who has PKU?
I know most of you reading this would say yes, but I know lots of people who haven‟t heard anything at all about PKU until I tell them everything there is to know! And they wouldn't even know that PKU actually stands for Phenylketonuria and every reaction I get is „what‟ or „huh‟.

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