Mark Brenneman's Story

By Mark Brenneman

Mark Brenneman, age 19, is one of the four 2002 Guthrie Scholarship winners. He is an athlete as well as a top scholar. He has an unflinching dedication to maintaining a strict diet, and a maturity that exceeds his young age. Now a freshman at Harvey Mudd College in Claremont, California studying for a degree in Engineering, Mark continues on his already firmly established path of excellence.

Hi. My name is Mark and I have lived on a strict PKU diet since my birth on May 14, 1983. A few days after I went home as my parents' new bundle of joy, the doctor called with my diagnosis of a metabolic disorder called phenylketonuria. To help on this strict diet, my parents were referred to a clinic in Portland, Oregon called the CDRC. There, my new nutritionist informed my family of all the food and milk choices I would have. The staff at CDRC has made my diet so much easier. Without Kathleen Huntington, nutritionist, and the rest of the wonderful people at the clinic, everything would have been much more difficult, including the process of getting the medical food.

As my input on the diet soared with the independence of preschool, I spread my decision-making wings. There would be no animal crackers for me, just good old orange juice. Small steps turned into bigger ones. Ultimately, I determined my pathway would be to optimize my dietary management. I regularly turned down lunch trips to the local pizza shop and Subway restaurant where my friends would eat. I have refused more pizza, hamburgers, steaks, cookies and ice cream than anyone I know. "No, thanks, I can't have that" became a common response. Instead, I resigned myself to my phenylalanine-free milk and last night's protein-free noodles. Through these wise decisions, I have regularly maintained over the years an average phe level of 7 mg/dl. I try to test my blood every two weeks, using a lance to draw the blood. To keep my blood phe level this low, I keep track of how many grams of protein I have each day. I try to keep my intake of protein below 7 grams a day (about 300 mg phe).

My family has really helped in the management of my diet. My mom has always made PKU seem like something normal. She was always willing to make me something good tasting and low in phe. My dad and brother (age 16, non-PKU) have also acted as if PKU is nothing abnormal. My family had the attitude that PKU management was a priority. They never wanted me to look back and think, "if only we had been more careful with the diet." With all this support, I have never thought of straying from the diet.

Since I follow the diet so successfully, it has allowed me to do many things and maintain very good grades. I have participated in both Varsity soccer and tennis in high school, on very competitive teams, and I plan to continue both sports into college. With my low phe level, I was able to graduate from high school summa cum laude (highest honors), taking difficult courses such as physics, advanced math, and science and graduating towards the top of my class. I was on the honor role every semester of my high school career.

Of course, my PKU diet influences every meal I eat. In the morning, I usually get up and have some pancakes made out of a combination of Cambrooke MixQuick and the Low Master Mix from Low Protein Cookery for PKU, or low protein cereal with fruit and non-dairy creamer. Low protein toast with the "fake" low protein peanut butter and jam, or muffins my mom makes, also are options. I make my formula with 50 grams MTE Amino Acid Blend (from Applied Nutrition) and 80 grams of MTE Vanilla Drink Mix. To get more calories in my diet, I add 30 grams of DuoCal calorie supplement to the mix. Every ten days or so I sit down and pre-measure clear plastic bags of the formula (which I drink out of an insulated water bottle). I always drink my "milk" from the water bottle and the two different bottles I use are only used for my milk. It goes with me everywhere, so I can take my formula throughout the day. My friends are used to it and help me remember to bring it along. In fact, one of my friends just told me that she thought she had seen another person with PKU because he had been drinking from the same type of water bottle!

My lunch usually involves a vegetable sandwich or soup. I add some low protein pasta to every soup I eat to make it go farther and fill me up. I'll also eat any leftovers, like spaghetti or pizza from the day before if they're available. At high school my mom always packed a lunch for me with noodles flavored with different sauces, fruit snacks, and low protein goodies - anything to fill me up for after school practices! During sports seasons I would eat a Phlexy 10 Amino Acid Bar (or two) after school as well, to give me more protein and energy.

During dinner I usually enjoy Aproten Spaghetti or some sort of low protein rice dish. My mom has been very creative with the diet in making many variations. She has invented the "Gordita," a low protein tortilla with sautéed vegetables and salsa, a low protein burrito (see Burritos Brenneman on the next page!), and a low protein calzone. Those are my favorite meals.

All this low protein food can cost a lot. To pay for my medical needs, we are fortunate that our insurance company pays 80% of the cost of my food and medical beverage, and we pay the rest.

PKU has restricted my diet, but it also has allowed for some interesting situations. On one trip to Germany when I was only five years old, the Customs officials found my formula and thought it was steroids. Luckily, we had a note from our nutritionist that explained our need for this white powder in plastic bags. We also were visiting a German friend who could explain things better than we could.Going to summer camp was interesting the first time as my mom prepared the whole week's food in advance, but didn't cool the bread before bagging it. When it came time to serve the bread, every piece was moldy. Mom had to remake it, and deliver it to the camp, over 75 miles away!

PKU also has helped a lot as a conversation piece. I have met many new people and had interesting conversations just talking about my diet. Everyone to whom I explain PKU finds it very interesting. All of my high school friends have known about it for a long time and are very used to it. They like to kid me about my "special" milk and my food. They even make sure I bring my PKU food along and their parents try to have low protein options available for me. I feel that it has been about as good as it could be for me!

Now, as I start college, my diet is on my shoulders much more than before. I just started attending Harvey Mudd College in Claremont, California. I talked to the cook in advance and he seemed very willing and optimistic about handling the diet. He offered to make my meals separately so I don't have to worry about it as much. This is very reassuring and allows me to focus on my studies. My mom also devised menus and coordinating recipes to go with their 4-week meal rotation. I still have to make my formula and handle any snacks, but thankfully the brunt of the work is being handled for me. The college is doing a fantastic job with my food. The chef is a good cook, and my phe levels have averaged 6 mg/dl so our system is working well.

In college, I'm planning to major in the field of Engineering. I have always been proficient in math and science and I feel that engineering would offer me good career opportunities.

Last summer, I attended a PKU retreat in Canada and met many other young adults with PKU. There, I saw a variety of diet management styles. Some adults who had gone off the diet conversed normally, but seemed more limited in their ability to grasp implications of their disorder. None had stricter diet compliance than I did. I saw first-hand the downside of laziness and lack of discipline. The retreat reinforced my decision to follow the diet strictly.

PKU has influenced every corner of my life: home, school, work, soccer, tennis, and travel. Every day I am faced with decisions on food. But I have accepted PKU as part of my life and always maintained optimism. I believe that sticking with this diet is a small toll to pay to open the gates of knowledge that otherwise would be locked.

Burritos Brenneman

This is one of my favorite entrees (the recipe is a creation of my mom). The ingredient proportions can be changed to suit your taste, and other ingredients can be substituted. The flavorings are what is important. The burritos freeze well, so make extra for weekends or busy days. I like the filling just plain also, as a vegetable dish.

• 1/2 c. (84 gm) chopped onions
• 1 c. (116 gm) chopped zucchini squash
• 2 Tabl. vegetable oil
• 2 cloves minced garlic
• 1/4 c. (24 gm) sliced black olives
• 1/4 c. (41 gm) corn kernels
• 2/3 c. (107 gm) seeded, chopped, fresh or canned stewed tomatoes
• 1 1/2 c. cooked low protein imitation rice
• 1/2 pkg. (9 gm) Lawry's Taco Seasoning Mix
• 1 recipe Tortillas dough (p. 108 Low Pro.Cookery for PKU, or use newsletter recipe p. 7)
• 2 Tabl. Lawry's Taco Sauce
• 1/4 c. (23 gm) low protein shredded cheddar cheese (Cambrooke Foods cheese use for nutrient calculations)

Sauté onion, zucchini, and garlic in oil. To pan add olives, corn, tomatoes, and cooked rice. Add dry taco seasoning mix; stir and cook over low heat until taco seasoning is well mixed in. Divide Tortillas dough into four balls; roll each quite thin on wheat starch dusted surface. Spoon burrito mixture into center of dough, spreading out. Pour taco sauce and cheese on top of the burrito mixture. Fold over and press open ends. Transfer to lightly greased baking sheet. Bake at 425º F. 10-12 minutes. Serve with more salsa or taco sauce (excluded in calculation). Makes 4 servings.

	Phe (mg)	Pro (gm)	Calories
per recipe	253	6.9	1252
per serving	63	1.7	313