My name is Stephen Nielsen. I am 14 years old and in the ninth grade. I am about 6’ 1” tall. My three older sisters are now all in college, so I get to be an only child. I have mitochondrial trifunctional protein deficiency. That means that I don’t break down long-chain fats for energy, which is pretty much in all foods with fat. When I am having a problem with energy I feel tired and exhausted, and can get into trouble. MCT oil helps give me energy I can use. I take it several times a day, mixed with chocolate milk. Most of the time I feel pretty good, but I get tired more easily than most people.

This year I went snow camping at Paradise on Mount Rainer with the Boy scouts for one night. The schedule was kind of crazy because it snowed about two feet overnight, and another storm was headed our direction in the morning. We decided not to eat breakfast but to just get off the mountain. This was ok for most people but for me it was a problem, because I had burned through all available energy and was starting to break down muscle. By the time I walked the 300 yards in mid-thigh deep snow downhill to the parking lot restroom, I was very weak and couldn’t move any of my muscles. I sat on a bench until my leaders and scout friends could rescue me and lift me into the truck. I spent three days on an IV in the hospital recovering.

In contrast, in July, I went on a Boy Scout 62-mile canoe trip over the course of a week, on the Willamette River in Oregon. My parents were nervous. This time I was much more prepared, and there were no problems; I had a great time. I made sure I got my medicines and MCT oil on time by using a medical reminder watch with alarms. The watch would send an alert to my leaders if I missed taking anything.

This year I started high school and I’m excited about taking an engineering class. I’m also excited that I don’t have PE this year. I’d like to tell my English teacher that I have to drink my medical drink in her class or else I will go blind, and my heart will stop beating, and she will be held responsible, just to shock her.

Val and Diane Nielsen