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

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

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

Jace, born 1991

So my name's Jace I’ve had PKU for almost 27 years now. My brother and I are the second set of twins in the United States to have it. My…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

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

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

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

Elizabeth

I didn't know it at the time, but I have been blessed in my PKU journey. I am 30 years old. Growing up, I remember drinking my formula, circle bread…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