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

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
Scottie, born 1974

Scottie, born 1974

My name is Scottie Roland, and i have Classic PKU. I was born on May 26, 1974. Im 43 years old. I was diagnosed with PKU at birth. I’m the…Read more
Alicia, born 1959

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
Jace, born 1991

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

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


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

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