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

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

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

Marissa, born 1997

My name is Marissa, I am 20 years old, and I was diagnosed with Classical PKU at birth. My whole life I have struggled with my diet, my best levels…Read more
Olivia, born 1991

Olivia, born 1991

I was born on a Saturday morning in 1991. Although routine screening had been established for PKU, treatment protocol was not entirely agreed upon as it is today. My poor…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

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
David, born 1959

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

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