Dean – Pennsylvania-EOE

Dean – Pennsylvania-EOE

Hello. My name is Dean Harris. I live in West Chester, Pennsylvania and I am 11 years old. My brother, Cole and I have a rare disease called eosinophilic esophagitis.

I was born with eosinophilic esophagitis. When I was younger, I was sick and in the hospital all of the time. None of my doctors knew what was wrong. My mom and dad took turns staying overnight in the hospital with me. I missed my home. I missed my friends. I missed family celebrations. I missed playing outside. I missed a lot of things kids get to do.

When the doctors finally figured out that Cole and I have this disease, we had to leave our home in Atlanta and move to Philadelphia. My mom and dad said Cole and I would have better doctors there. I don’t think I was really sad to move, because I didn’t spend much time in my home. I was always sick. And since my Nana and Popi lived in Philadelphia, it seemed like it would be an OK place to live.

The doctors in Philadelphia were fine, but in order to figure out what was making me sick, my parents kept removing food from my diet. I was, am, the kid at the birthday party who can’t eat the pizza, chicken fingers, the cupcakes, the soft pretzels, the popcorn. I can’t even eat the veggies with the dip. Every time my parents removed a certain food, I’d wait a few weeks then have a biopsy. Surgery was hardest when I was really little. I was pretty scared on surgery days. As I got older, I just got used to it. But, my biopsies kept coming back bad.

Pretty soon, there were very few things I could eat. Barely anything, really. I wasn’t growing as well as other kids and I started to have problems with my bones. I had to quit playing sports and I couldn’t play outside with my friends. It was dangerous. I got hurt too easily.

When I was in second grade, I had to stop eating all food. My doctors could not figure out the foods that were making me sick. I was only allowed to drink elemental formula and suck on ice chips and DumDum lollipops. I can tell you that this formula smells and tastes like vomit. If you don’t need it, you would not want it. The first time I drank it, I was sitting at my kitchen table with my family. We were all crying. I did my best to chug it down. But it tasted so bad that I threw up the formula in the hallway as I tried to run to the bathroom.

But I quickly had to get over the gagging. This formula was the only thing my body would accept. For the next several months, I had to drink 7 boxes of formula a day. I figured out that if I held my breath and drank as fast as I could I usually finished the box without getting sick. And my mom always gave me 2 DumDum lollipops when I finished, which gave me something to look forward to when I was drinking the stuff. On school days, I had to go back and forth to the nurse’s office to drink the boxes of formula. I was up and down all day. She had to monitor that I drank it all. Most of the kids at school were nice to Cole and I, but there were bullies. These people told us our food was weird, that our disease made us weak so we would be the last kids picked for the kickball games at recess. Some would even dangle food in front of us and tease us that we would never eat it.

After about 8 months of elemental formula, I was able to find enough safe foods and I could stop drinking the formula, the medicine I needed to survive. I hope I never need it again.

Elemental formula gave me what I needed to get better. I didn’t like it. Of course I wanted to eat the pizza, chicken fingers, the cupcakes, the soft pretzels, the popcorn. Even the veggies with the dip. But the formula was my only option. It was the only thing that worked. Elemental formula gave me what I needed to help me live a better life.

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