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 from living in Egypt for a while, overturned his log truck and was thrown through the windshield. Miraculously, he was fine! A few days after arriving home with me, my parents were contacted that something was wrong and they needed to return to the hospital. I was diagnosed with Classical PKU at around 10 days old. I had an older sister, and two years later a younger brother, neither of which have PKU.

My parents were pretty frightened to begin with, but my doctor and her team eased their minds; guiding them through the ins and outs of PKU and constantly providing them encouragement and support. My parents always did a fantastic job providing low-phenylalanine (phe) foods when I was a child (at the time there seemed to only be pasta and canned bread) and formula. They went out of their way to make sure I felt included and always had a low-phe version of whatever the rest of the family was eating. The only formula I remember having as a kid was terrible— my poor mom tried everything she could think of to make it more appealing, but I sometimes would sneak and pour it down the drain… until I realized how expensive it was and how vital to my health.

When I started school, my mother always explained PKU to my teacher and supplied her with a stash of low-phe treats in case any of my classmates’ moms decided to surprise everyone with cupcakes. The sweet cafeteria ladies were always so good to me. One, (my favorite), always brought me the most lovely homemade pickles to enjoy during lunch. This did attract the attention of my classmates, but the dilly euphoria more than made up for any teasing or jealous remarks.

During my high school days, temptation often got the best of me and I chose to go without my PKU formula and to eat what my friends ate, (reasoning that as long as I didn’t eat meat, I was ok.) My phe levels were out of control. Before leaving high school, I had determined I wanted to be a roller coaster architect. But my grades in geometry were pretty terrible, and I was beginning to think there would be a lot of liability in that line of work…

Thankfully, I attended my first PKU camp that summer, and things changed. At Emory University’s Annual Metabolic Camp in June 2009, I learned what it meant to thrive with PKU. I met other girls with PKU and learned about how PKU affects so many facets of health. I heard a young mom with PKU tell how she managed during pregnancy and delivered a healthy baby. For the first time, I met ladies with PKU who had been born prior to newborn screening and thus treated late… It hit me like a ton of bricks that I had been blessed with so much potential- and I was blowing it. I left camp with a calling I hadn’t expected: I was going to become a dietitian.

I graduated with a Bachelor’s degree in Nutrition at the University of Alabama in August 2013, completing small internships in metabolic nutrition with both UAB Sparks Clinic and Emory University Genetics. I passed the Registered Dietitian registration exam and officially became a dietitian in October of 2013. I received a Master’s degree in Nutrition in 2014, completing a thesis about alternate uses for PKU medical formulas to increase compliance.

I have worked in clinical nutrition for nearly 5 years. I work as a clinical dietitian for Cahaba Medical Care Foundation, a federally-qualified health center, seeing patients in four of our clinics in central AL. I am certified as a Culinary Medicine Specialist, and have particular interest in functionality of foods and ingredients: provision of health benefits beyond basic nutrition. I’ve been able to return to Emory’s Metabolic Camp several times as a camp cook, assistant counselor, and counselor. The message I pass along to my clients and campers is finding strength in weakness; making choices to help prevent what is preventable, and committing to therapeutic changes to treat what is not.

Recently, I have been able to participate in advocacy efforts for the Medical Nutrition Equity Act. This is close to my heart, as I personally endure the financial struggle with which so many other Americans in the Rare Disease Community are burdened: the lack of insurance coverage for medically necessary metabolic nutrition products.

Despite some struggles, I’m so thankful for the life I have. It always amazes me that I was fortunate enough to have been born after newborn screening was implemented; my life could have been so different. I am surely blessed beyond anything I deserve. I’ve had great experiences and amazing opportunities– so many as a result of having PKU and the journey God has led me on in discovering ways to use this weakness as strength. And I look forward to more.

I look forward to the trip with my wonderful husband to pick up my first son or daughter from India in Spring 2019. I look forward to being a mother! I look forward to becoming more active in the PKU community. I look forward to years of lifting others up and helping them to reach their potential.