Dan Wells' Story

This story is from National PKU News, Spring/Summer 1999 issue.

I was born on August 14, 1980 in Mission Viejo Hospital, Mission Viejo, California. My PKU was diagnosed at the hospital just after birth. I have received all of my follow-up care at Los Angeles Children’s Hospital.

I have two brothers. My eldest brother, Ben (age 21), attends college in Santa Barbara. My younger brother, David (15), also has PKU and is a freshman at Mission Viejo High School (where I also attend). David and I both enjoy skating and playing acoustic and electric guitar together. David is an avid roller-hockey player, and Ben is a veteran surfer and underwater diver. Ben recently completed the Marine Tech Diving course at Santa Barbara Community College and will transfer to UCSB soon. My parents own their own property management company and are constantly busy running its daily affairs. When I was younger, our family would often attend PKU picnics and meetings where we would go as a family and spend the day with other PKU families sharing new foods and desserts and drinks, and just playing games and having fun.

I am a senior at Mission Viejo High School. Ever since kindergarten I’ve been in accelerated classes. I was in the GATE program (Gifted and Talented) during elementary school years, and had all Honors classes during junior high and high school. I was in the top 25 out of over 500 in my class my freshman, sophomore and junior years and remain in the top 50. I am a member of the National Honor Society and enjoy all of my classes. Particularly, I am interested in math and economics.

I plan to pursue a career in either Sports Medicine or Business Management. I have always loved sports and I would love to be able to aid a team with medical care, or perhaps run a sports-related business. Right now, my mind is still open about which path to choose.

My personal goals are to remain positive about my diet, which will never be hard since it is such a part of my life now, and to keep up on my visits with Dr. Koch in Los Angeles as I grow older. As I near the college road, my personal goals are to stay focused and finish with a Master’s degree in Business or go on in medicine—and to keep snowboarding and playing hockey for the rest of my life!

I attend the PKU clinic in Los Angeles at Children’s Hospital about once a year, along with my brother. As always, I will continue to see Dr. Koch. He has been my doctor since the beginning. It’s always great to see him and have him twist my arm about becoming a Genetics doctor! He’s been a wonderful influence on my life and on my brother’s life. Usually, each visit includes a simple medical checkup and blood test. My brother and I will also talk to Dr. Koch about our diets, our studies and life in general.

I drink Phenyl-Free, which is the formula I started on when I was an infant. My brother and I have always liked it. I pour one entire can into a blender, add water and mix it with a hand blender. Then I simply divide it evenly between my container and my brother’s. This method gives us both the daily amount that we need to drink.

For foods, I basically stay with carbohydrates, veggies and fruit. I like to eat a piece of toast or cereal with fruit for breakfast with my Phenyl-free. Then, I’ll usually have some kind of veggie sandwich for lunch along with an apple or some other of fruit. For dinner, I eat whatever vegetables or soup are ready to be cooked up. I really like my mom’s rice tacos and homemade vegetable soup.

My diet has been working out very smoothly throughout my high school career. As a freshman and sophomore I would bring a lunch that included fruit, chips, and maybe a drink, and I would drink my Phenyl-Free when I got home. As a junior and senior I was able to leave campus for lunch so I would go home and eat and have my formula.

The only awkward situations that ever arise are when I need to explain why I eat the way I do. Usually, if I know the person well enough, then they already know about my diet. If I feel they would be interested, I tell them I’m missing the enzyme to break down certain proteins so I’ve been eating this way my whole life and it just comes naturally now. If I feel they would be satisfied with a quick answer or if that’s all I feel like giving, then I simply say I’m a vegetarian and that’s that. One funny thing about my friends and I eating out is that they all try to be the first ones to call "dibs" on my meat patty when I order a hamburger!

I do not have friends with PKU other than my brother. My friends who are close enough to know me all know and understand my diet and think nothing of it. The friends that I have made more recently know about my diet and usually still like to bug me about it in a playful way. A lot of my friends think I am actually lucky, because I always end up eating a lot healthier than they do.

When I was younger, PKU bothered me a little more. I would get frustrated or embarrassed in elementary school when I couldn’t eat like the other children from the lunch line. As you grow older, people become a lot less judgmental about such trivial things as one’s diet. I used to resent having to watch my diet and sometimes it made me very mad that my older brother had it so easy with his normal diet. But these times were rare. Most often I remember being fine with my diet, especially since I had to be there to guide my younger brother through it. Watching my younger brother’s diet and helping him helped