A living history project for adults with PKU

Millie, born 1991

My PKU story begins on a balmy morning in July of 1991. I was born in the only hospital in Selma, AL on the day my grandfather ("Pappy"), freshly home…Read more

Alicia, born 1959

Hi, my name is Alicia (Endress) Davis, an only child, who was born three weeks early in November, 1959. At this time they had NO NEWBORN TESTING FOR PKU here…Read more

Kelsey, born 1992

PKU does not define me but PKU has molded me into the adult I've become. Growing up with PKU taught me accept my differences early on. I couldn't eat the…Read more

David, born 1959

What does PKU mean to me? To me PKU is all about community. We all consider ourselves one big family. We are a community of patients, Medical prefessionals, advocates, and…Read more

Ashton, born 1987

Hi, my name is Ashton! I am 31 and have CPKU. Last year I had my beautiful baby boy, who is PKU free and is a perfectly healthy and happy…Read more

Debra, born 1958

I was finally diagnosed with classical PKU at 2 years and 4 months after showing many symptoms such as head banging , slower to reach my milestones with retreating into…Read more

Kevin, born 1980

Life is much better when you aren’t alone. In the fall of 2011 I was alone in my PKU experience. Growing up in the 80’s in Northern Louisiana, I didn’t…Read more

Dionne, born 1986

For the longest time, I never wanted anyone to know there was something different about me. I lived my PKU world in the dark, in silence, alone. As a child,…Read more

Melissa, born 1994

My name is Melissa and I was diagnosed with Classical PKU at 2 weeks old. My parents were so good at keeping my levels in range while I was growing…Read more

Kay, born 1957

PKU is a major part of my life but not all of who I am. Most of what I am now as an adult was formed from being the first…Read more