Helen Johnson's Story

By Helen Johnson

I was born on a sunny day in June - June 12, 1984 actually, in Minneapolis, Minnesota. Since I was born during the nurses' strike, I was not tested for anything. The nurse attending my mother told her that she could bring me into the clinic a couple of days later, and they would test me. The nurse assured my mother that I wouldn't have PKU, because I had dark hair ... obviously, she was wrong. I had my heel prick test at the clinic the day after discharge. A few days later, my parents were informed that I had tested positive, and I went to the PKU Clinic in the Pediatrics Department of Fairview-University Hospital. I have continued going to that clinic ever since, meeting regularly with Dr. Robert Fisch, and now Dr. Chet Whitley as well as my dietitian, Dorothy Markowitz.

My family has been a major player of keeping my levels where I want them. Both my parents have taken time out of their lives to make sure that I'm eating the right things and am healthy. My father, Steve, is a banking attorney who works at one of the greatest buildings ever (if you want to go shopping while he works). My mom, Susan, is the goddess of our humble home and dances on weeknight evenings. Both of them love coming to PKU events, such as the Christmas Party and the Summer Picnic. Steve has been on the Board of the Minnesota PKU Foundation for many years. Nora, 15, is my little sister - a coffee addict who fulfills the younger sibling role perfectly. She is the center of her own universe - it took her 14 years to learn what the acronym PKU stands for. I'll miss her self-absorbed little self next year though, I have to admit.

I try to keep a blood level of below 6 by taking my blood about once every two months. I am supposed to draw my own blood, but I am too much of a chicken to do it myself, so weekend mornings my mom will prick my finger as I look in the opposite direction. I admit that it has been incredibly difficult to stick to a strict diet; I have even cheated on the diet, which is something that I don't recommend. Occasionally, I would eat things that I shouldn't eat, and then I learned the reason why. My concentration and learning abilities went down the proverbial toilet, with my blood levels rising to as high as 17, which is really hard for someone who usually has a level below 6. I currently drink, swallow and chew Phlexy-10, which comes in drink, pill and bar form, and I take it three times a day. I didn't have any real problems as I switched from Lofenalac to Phenyl-Free to Phlexy-10 over time. I try to take in about 350 phes, which I used to keep track of in a daily planner. Now, I usually can eyeball the amount of phes that I've had in a day, and keep pretty good tabs on it. I have to say that I probably eat the weirdest things for breakfast of anybody that I know. Some mornings I eat Jell-O and fruit, other days the leftover mashed potatoes. Usually, I eat about five salads a week (my lunch), sometimes with a baked potato, at my school. Dinner is whatever I can find in the refrigerator or what my mom has made that day. When I get hungry, I try to fend off my chip addiction and head for the fruit…usually it works. Sometimes even just drinking juice or water will help, along with dried fruit. Both my low-protein food and formula are 80% paid by insurance 20% paid by my parents.

My academic history is rather long. To begin with, I was a public school student until my freshman year of high school when I entered Mounds Park Academy. MPA is a small, SMALL college preparatory school with a closely-knit group of students. I've also been on the honor roll in both systems since the sixth grade. At high school, I've lettered in Academics all four years, Theatre for two years, and Choir for four years. I hope that I can maintain my GPA during my college years, and I hope that I'm able to decide my major sometime. Right now I'm completely undecided! I also hope that in college I get a chance to continue some of my extra-curricular activities, such as acting, singing and dancing. I've been acting since fourth grade and singing and dancing for even longer. It would be wonderful to have a career in any of the above subjects, but I have a wide range of interests-I am also very interested in genetics and foreign relations.

One funny story about my PKU formula and me is when I was a sophomore. I was drinking my formula in the nurse's office with my friends Rachel and Natalie. I'd always been teased about the smell of my formula, so I wouldn't let them smell it. But that day I let Natalie smell it and the first words out of her mouth were "It smells like cat food!" All of my friends have been very supportive of me. They all know about my diet, and make sure I'm not eating something I'm not supposed to be eating. They're all so sweet! When I was younger, I was not so positive about my diet. I remember wishing that I didn't have it so that I could be "normal" and eat the meat and cheese my sister did. Usually, to avoid the questions about it, I didn't tell people I had PKU. In middle school, it was so bad that I drank my formula in the school nurse's office. Now I am happy to say that I'm proud of who I am and what PKU makes me as a person. I know I'm not defined by it, but complemented by the addition to my genetic makeup. That doesn't mean that it is any easier to look away from a tempting platter of cheese or ice cream, but I know that I'm doing what is best for me when I refuse those things. The biggest challenge to stay on my diet is when my life gets really bad and the things that I can't control frustrate me. But, my parents have been a great rock for me, always helping me stay focused and remember to drink my formula or eat my formula bars. They have always been there for me, and I can remember lots of happy hours with my dad, making special egg rolls and mushroom burgers. My sister really hasn't helped tremendously with reminding me to drink my formula, but she has always helped me stay on the diet - if only because she's very protective of her food. (I would always steal tastes of things off her plate.) Nora has given me lots of macaroni and cheese noodles over the years and for that small taste of normalcy, I have to thank her. When we go on trips it can be hard to maintain the correct levels, because it is not always easy to find good food for me. My family, however, is very good about looking around for restaurants and checking out their menus to make sure there is enough food there that I could eat.