John Engstrom's Story

This story is taken from the Spring/Summer 1998 issue of National PKU News,

John Engstrom, our first Robert Guthrie PKU Scholarship winner, shares his personal story.

I was born on January 27, 1980 in Okinawa, Japan. Two weeks later, my PKU was diagnosed. I had a phe level of 28 mg/dl (1680 µmol/L) when my PKU was first identified. After I was fed, my level went over 40 (2400 µmol/L), so I was immediately diagnosed with ‘classical’ PKU. I was medically evacuated to Hawaii. After approximately three months in Hawaii, my family and I moved to the San Diego County area, where I have lived ever since.

My family has always been very supportive of me. My father just recently retired from the Marine Corps, and is pursuing a second career. My mother is a realtor. My sister, Eley, who is 20 years old, currently attends UCLA with a major in English. My parents have always worked really hard to provide everything for my sister and me, trying to give us a better life than they had as children. My mother has always been there for me whenever I needed her. My sister has always helped me whenever I needed it.

A: I currently aim to keep my levels around 10 mg/dl (600 µmol/L) or less. Up until age 10 I tried to keep my levels around 5 (300 µmol/L). The only time it has been significantly higher was when I had a high phe challenge, when I was 2 years old.

A: Since my freshman year I have held the #1 class rank. My favorite class that I’ve taken in High School is Biology. I really enjoy projects that allow me to apply outside knowledge. For example, in my junior year English class, we did several projects that allowed me to do this. One of them was a music video that explored an immigration theme. We animated this video using Legos. This allowed me to apply my knowledge of computers as well as music.

Right now my top choices for universities are Stanford University and the University of California, San Diego. I plan to major in Biology or a computer related field as an undergraduate. I’m not sure exactly what I want to be yet. One of my top choices is to become a doctor. I really enjoy helping people and working with people. Another possible field is something in computers.

A: I go to the San Diego and Imperial Counties clinic every six months. I go through a basic check up and spend most of the time just talking to my doctor about life.

This summer I began to volunteer at the clinic. I helped set up a little seminar. I also helped set up a picnic for all the local PKU kids. I am one of the oldest kids who has stayed on the diet at the clinic, so I spend a lot of time talking to families of younger children about PKU and my experiences with it.

A: I drink Phenyl-Free twice a day, once in the morning before school and once at night, usually before I go to bed. The only problem with it is that I do not really care for the taste. My formula is provided by the military because my dad is a Marine. I use about 1 1/2 cups of the powder every day.

A: I don’t really have a "method" for counting. By now I really just use experience. At this point in my life my family and I have a good idea of how much of each type of food I can eat. If I take in a lot in one day, I try to make up for it the next day by eating foods that are lower in phe. I consume foods low in protein, primarily fruits, vegetables, rice and rice noodles.

A: Usually in the morning I just drink my formula before I go to school. On the weekends, because my mom is Chinese, I usually have a Chinese breakfast, which is simply rice soup (like porridge, mostly water) with some vegetables. At school we have what is called "open campus lunches," so we can leave the campus for lunch. This is a great thing for me because I usually go to a friend’s house to eat. I usually eat salad, and Ramen noodles. For dinner my mom always makes a lot of vegetables prepared Chinese- style. My favorite is stir-fried rice noodles.

A: I handle my diet on a "need to know" basis. I just tell most people that I’m a vegetarian, and that suffices. However, all my friends know about my diet. One of my friend’s moms does not really understand that I have PKU, and it is funny because her son always explains it to her. When I go over there she often offers me things that I cannot eat. Usually she offers me beans or something because she knows I don’t eat meat and "you need your protein." My friends and I always laugh at this because she means well but she just doesn’t understand it. She thinks I just can’t eat meat.

A: My friends are really good about it. Because I’m very comfortable with my diet, they are too. Some of my friends have started a menu of things that I have to try when they find a cure for PKU!

A: My family did a very good job teaching me. I never really felt left out because of my PKU. They told me that I was special, and that it was just a fact of life that I had to deal with. Some people had bad sight or hearing, I just couldn’t eat things high in phe.

The first picnic I went to was for my preschool. At the picnic they served hot dogs and chips. Because I could not eat the hot dogs I just ate the potato chips. Because the main course was hot dogs they did not give a lot of chips, so it did not fill me up. When I asked for more chips, the room mom said no and that I had to eat the hot dogs first. I tried to explain to her that I could not eat hot dogs, but she thought I was just being picky so she told me that I had to finish the hot dog before I could have any chips. So I said that I was finished and was going to go play, and she said that I could not leave until I finished the hot dog. I ended up just sitting at the table while all my classmates played, until my mom came to pick me up. When my mom came she explained to the room mom that I had PKU.

Later on, in my early school years, my parents would meet with the teachers before the school year started and explain it to them. Then the teacher would have me explain PKU to the other students so that they would know about it too.

A: For me, staying on the diet is the only option. I do not believe that I would have been able to accomplish everything that I have without staying on the diet. I also think PKU has helped increase my will power and discipline because I had to learn to be disciplined at an early age; it spread to all aspects of my life. As far as I’m concerned, PKU is just another part of life that I must deal with.

A: I wrestled for three years during high school. I also play on my school’s Academic League team, which is a competition somewhat like Jeopardy where we compete against other schools. I really enjoy this because it allows us to apply a lot of what we learned throughout the years, and it keeps my mind sharp by forcing me to think quickly. I am also the Editor-in-Chief of the school newspaper. Our newspaper, the Lancer Express, is among the top ten high school newspapers in the nation. We just won the National Columbia Press Association’s Gold Medalist Award. Also I like to work on computers in my spare time, especially video games. I also like doing computer animations. I like computers so much I started my own part-time computer consulting business, where I teach people how to use computers as well as fix their problems. I also build computers for people.

I started learning the violin when I was seven years old. During my freshman year, I stopped taking lessons when my teacher moved away. I pick it up now and then just to play. I used to not enjoy practicing and I disliked it very much, but now I really enjoy playing. I’m really glad that my mom made me take lessons because it’s something I’ll always have.

I also attend the San Diego Chinese Academy every Sunday. I have been going there to learn Chinese since I was 12. I learned to speak and understand from my mom; I go to the school primarily to learn to read and write. At the school I also learn a lot about the culture.

A: My entire family always thinks of me. Anytime they see something that they know I like to eat, they always save it for me. My sister and my cousin did their second grade science fair project on PKU and they won first place. Eley has always taken an interest in me, and makes sure that I’m OK. My parents treated PKU as a simple fact of life. Everyone has some kind of problem, mine just happened to be PKU. They did not alienate me because I had PKU. At the dinner table, I did not have any "special" food. Everyone ate what I ate (my mom made sure everyone ate the veggies). Because everyone shared the food I ate I did not feel different than anyone else. I just couldn’t eat some of the things they ate.

My best memory about growing up in my family is just the incredible amount of love that I received from everyone. I think that because I received so much love, I am still a very happy and positive person.

A: I have done some travelling. I have gone across country before and up the West Coast. One of my favorite trips was the time I went to Taiwan. Also this last summer I went to Hawaii. Often the hardest thing when travelling is finding a refrigerator for my formula (because I do not like drinking it when it is just made and it has to be cold). It is usually pretty easy to find things I can eat because a lot of people are vegetarians today.

A: For the parents of younger children, I have to say give them all the love that you can because that really is the most important thing you can give them. If they have your love and support, they can deal with anything. Don’t make them feel different then anyone else; just explain that this is simply a part of their life, and treat it like that. Have them begin to identify the foods that they can eat at a young age, so that they can learn to be responsible for themselves. Give them a choice of what they want to eat so that they feel that they are in control of what they eat and not the PKU. Also don’t allow PKU to become a handicap or an excuse; make it into an advantage. To teens I say "just stick with the diet, it’s worth it!"