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

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

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
Millie, born 1991

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


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
Kevin, born 1980

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

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
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

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