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 school lunches, have the birthday cupcakes or go out for pizza. I was terribly embarrassed as a kid having to be skipped in class when snacks were handed out and being the topic of concern at any birthday party of what I was going to eat. Although my mom made life easier the best she could, by having low protein cupcakes in the freezer at school so I could enjoy a treat with the others for birthdays or provide me a snack bag to bring along with me to parties, it was the big deal that was made at every event that included eating.

I now understand that adults were worried because they were not familiar with PKU and didn’t want to give me something I couldn’t have, but the attention their concern created made me cringe throughout my childhood. I felt like a burden and wished every time that the teachers, parents, camp counselors just silently skipped me or gave it me and I just wouldn’t eat it without drawing so much attention. My dread of food related activities at school and with friends made me a compassionate and understanding adult so when I was the camp counselor in the situation I had freeze pops ready to go and would just alternate them in for the kids with allergies/ dietary restrictions when cake/cookies/ice cream were brought in. I wouldn’t have the kids with allergies/dietary restrictions stick out or display their need for a different food option openly. I tried to treat them how I yearned to be treated as a kid.

Although growing up with PKU was sometimes tough, it did teach me a lot about discipline and self control. Playing sports was where I felt normal. I could perform on the field or on the track just like everyone else. Sure, I was fueled by an amino acid formula unlike everyone else, but no one knew that and my ability wasn’t affected by it. I continued with running throughout college, completing a half and full marathon and just ran the 2018 Boston Marathon. Marathon training requires extreme discipline that I have acquired over the past 25 years living with PKU. PKU has taught me to turn obstacles into opportunities.