pictured above: Zachary Berger (right) with his dad Marc Berger at the 2015 Texas Walk to Fight Lymphedema & Lymphatic Diseases in Plano, TX.

My Story, by Zachary Berger

There is no way I would be who I am today without my tongue. I guess that is the case for most people, but for me, I was born with a birth defect called lymphatic malformation.

Lymphatic malformation is a disease that causes thousands of cysts in my neck, jaw, and mouth. The biggest way that it affects me is that my tongue swells up for what seems to be no reason at all. It sounds pretty bad. It is. But it’s the only thing I’ve known my whole life.

Before last summer, when my tongue would swell up, it wouldn’t fit in my mouth. I couldn’t eat solid foods and I could only drink liquids through a straw. I couldn’t even talk, having to write down what I wanted to say in a notepad. This would sometimes go on for a week. I’ve has nine surgeries related to my tongue since I was born; the first one when I was only days old. The biggest surgery was two summers ago, when I was 10. They called it tongue reduction surgery. They cut a strip out of the middle of my tongue and they stitched the two sides back together. They also cut a little bit off the tip. The day of the surgery was July 3; I got out of the hospital July 7. Not exactly the type of fireworks I was hoping for.

I’ve been through a lot and I’m proud of that. I could have an excuse to be bad, not be happy, or not participate in any events or even school. But, I don’t. I get straight A's, I play baseball and football and, most importantly, I am a fun and happy person. When people find out what I’ve been through, they are surprised because I don’t show it.

There is no possible way I could have done all this without my mom, dad, and sister. No matter what I do or if something is going on, they are always there for me and supporting me. I couldn’t thank them enough for what they have done for me.

I continue to go through some really tough times. But, I am actually happy I was given this birth defect because it is part of what makes me who I am today.

Zachary Berger is the Texas State Chapter Youth Ambassador. His father, Marc, is the Texas State Chapter Vice Chair. The 2016 Texas Walk to Fight Lymphedema & Lymphatic Diseases will take place on October 15. Zachary will be telling his story of life with lymphatic malformation at the Walk.