John Kelly's Story

By John Kelly

John Kelly, age 18, is one of this year's four Robert Guthrie Scholarship winners. One of two children with PKU in his family, he is a top scholar, as well as an athlete, a musician and much more. He looks forward to a bright future practicing law.

I was born on August 20, 1983 and diagnosed with classical PKU within the first week. My phe level was just 11.9 mg/dl (720 µmol/L) but everyone knew I had PKU. My family was prepared for it because my older sister, Julie, had also been diagnosed with PKU when she was born in 1981. When my younger brother, Michael, was born in 1986, they tested him an extra time to be sure that he did not have PKU.

Since New Mexico has such a low population, there were not many other children with PKU. In fact, my sister and I were two of the approximately 12 children with PKU in the entire state! Dr. Stirling Puck was the only doctor who had any experience with the treatment of PKU. She is located in Santa Fe, which is about 60 miles from our home in Albuquerque. In 1989, Dr. Puck gave up private practice and we began seeing Dr. Ellen Kaufman at Lovelace Hospital in Albuquerque. We still see her today.

My parents both work at Sandia National Laboratories, which conducts national security research and development for the government. They grew up in Detroit and moved out here about 20 years ago. My father is a nuclear engineer and my mother is a computer scientist.

My sister Julie is 20 and a sophomore at the University of New Mexico. She lives by the university in an apartment and I visit her from time to time. She chose an apartment, rather than a dorm, because it is easier to manage the PKU diet that way. My brother Michael is 15 and a sophomore at the same high school I attend (St. Pius X). Like me, he also plays on the club ice and roller hockey teams at St. Pius.

My whole family realizes the value of newborn screening and following the PKU diet for life. I was featured in a state-sponsored movie about PKU and the importance of having babies tested through the newborn screening program. My mom is active within the state advocating for mandated insurance coverage of metabolic formula and foods. Fortunately, my parent's health insurance does pay for 80% of our formula. For children and pregnant woman without insurance coverage, the state provides their formula.

Of course I am still on the diet and my phe levels are usually under 6 mg/dl. We draw the blood at home every 3 months and send it to the state's screening lab. If I am tested when I am sick, the levels are higher (9-10 mg/dl) so I try to avoid testing then.

On school days, I usually have a bowl of Rice Chex with Rich's Coffee Rich non-dairy creamer diluted with water, or a low-protein onion bagel with a spiced-like-sausage mushroom patty for breakfast. I also have my formula, XP-Maxamum, after breakfast. For lunch at school, I typically have a sandwich consisting of low protein bread, mayonnaise, lettuce, and tomatoes. I also bring a Rice Krispie Treat, a fruit such as an apple or orange, a snack size bag of potato chips, and a Diet Rite Cola (sugar free, but does not contain aspartame). After school, I usually have a snack such as two cookies. Then for dinner, I usually have either low protein noodles, rice, or potatoes. My mother does a very good job making my dinner similar to what the rest of the family is having. Finally, I drink the rest of my formula after dinner. On days when I am particularly hungry, there is always low protein pizza in the freezer to warm up and snack on. Each day I consume 26 scoops of XP-Maxamum with Kool-Aid (sweetened with Sweet-n-Low). My daily intake is about 425 mg of phe. I do not usually count my phe intake, as the types of things I eat are very consistent from day to day.

On non-school days, my mother usually makes me either low protein pancakes or French toast for breakfast. I usually just have a sandwich, reheated low protein pizza, or leftovers for lunch, and the dinner is usually the same as those on school nights. Since I have been on this diet my entire life, I never had to adjust to it, because it is just a part of my life. As I have grown older, it has been slightly more difficult with eating out and what not, but routines are very hard to break. The most difficult part for me to deal with is changes in the routine such as new formulas or new types of bread.

I have received first honors (3.8 GPA or higher) every semester during high school at St. Pius. Academically, St. Pius is one of the best schools in the state of New Mexico. My current grade point average is 4.25. I was also on the A-Honor Roll every semester during middle school. I received recognition for being in the top ten of my class for the three years that I have been in high school. I have also received the Academic Achievement Award from the New Mexico State University Alumni Association for superior achievement in high school. The Alliance Francaise du Albuquerque awarded me with La Distribution des Prix in 1999 and 2001 for outstanding achievement in my studies of French. I have received two Academic letters for four consecutive semesters with a 3.5 GPA or higher, and will more than likely receive my third at the end of my senior year.

I plan to attend either Stanford University or the University of Michigan for undergraduate school, and then continue on to law school. While I am an undergraduate, I plan to study United States history as my major, and either minor or double major in political science. I plan to take a very challenging curriculum as I have done in high school and hope to have similar success.

After I finish my undergraduate degree in four years, I hope to attend law school at Stanford where I plan to work very hard and receive my Judicial Doctorate in another three years. Once I have finished college, I hope to begin practicing law, probably in the San Diego area of California. One day I may even become a judge or run for a political office, but only time will tell.

The major events that spurred my interest in the law occurred during the fifth grade. My determination to have a career in law has not changed since then. During that pivotal year, I was first introduced to the history of the United States and the structure of our government. Also, I was introduced to the judicial process through mock trials and lectures by practicing attorneys. During that year, and ever since, I have been fascinated with our government and the courts that preserve it. I have taken every class I could that would give me experience in the fields of law or government. Such classes include Introduction to Government, Criminal Justice, AP (Advanced Placement) U.S. History, and AP Government.

I enjoy playing all sports; my favorite is playing hockey. I play forward and goalie on my high school roller hockey and ice hockey club teams. Neither is a varsity sport in New Mexico at this time, but both are very close to being sanctioned. Our roller hockey team had an undefeated season this year and won the city championship. Our ice hockey team is also doing well this season. I also bowl in a league on Saturday mornings. Our team won second place last season and we hope to win the championship this year.

My extracurricular activities at school include National Honors Society, Speech and Debate, Model United Nations, and Academic Decathlon.

In my free time I also play the bass guitar in a "garage band" with my brother as the drummer and a neighbor as the guitarist. I never thought I would play a musical instrument, but since I picked up a bass guitar during my sophomore year, I have not been able to put it down.

I am currently employed at Smith's Food and Drug Centers and work as a Courtesy Clerk. As part of my job, I bag groceries, bring in shopping carts, empty trash, clean the registers and the bathroom, and whatever else needs to be done to keep the store safe and clean.

When I explain PKU to people, they occasionally get the impression that if I eat meat or something very high in protein, I will become mentally disabled. My friends occasionally joke around with me saying that they will force-feed me turkey sandwiches and Diet Coke with aspartame to keep me from getting higher grades than they get on class tests!

PKU has had a very significant affect on my life, but of course not as significant as if I had not been put on the diet at all. PKU has affected all of meal choices throughout my entire life and will continue to do so in college and beyond. At times, I wish that I could eat like a person without PKU, especially at restaurants, but I know that I will probably never be able to, and I accept that. PKU has made me the person that I am today and I am proud to have PKU. Without PKU, I would have nothing to set me apart from everyone else, and my success would not be as significant.

PKU has been a major part of my life since the day I was born to the present. At times, it has made me uncomfortable, although it has made me feel unique at other times. It can be burdensome and annoying, but no matter what, it will always be an important part of my life. It has always been difficult to explain to people why I cannot eat certain things, but in many cases I'm glad I cannot eat the food they are offering.

When I was younger, managing my diet was easier because I did not have to think about it, my parents did. However, now that I am older, I have the added responsibility of maintaining my diet. But it is not very difficult because of the training my parents have given me over the years. It has been easier to deal with my diet since I only drink my formula twice a day and am not embarrassed at school by drinking my Phenyl-Free. It is awkward when all my friends are eating pizza and I have to eat a salad, but I know it is far better than the alternative.

Without the help of my parents and my sister with PKU, I think I would have had a much more difficult time dealing with PKU. My parents have tried very hard to make substitutes for the many different foods that I cannot eat, and although not all of them are a success, I commend them for their efforts. If it were not for their efforts and guidance I would not be the person that I am today. My older sister has also guided me in coping with PKU, especially when I go out with friends. She has found many places with low protein foods where I can go out to eat. Without my family, PKU could have been the worst thing to ever happen to me, but it has turned out to be a blessing in disguise. It has made us closer as a family and has given me a big challenge to meet.