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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…

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.

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.

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.

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.

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.

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‟.