Ags

AGS

I'm 17, a walking genetic disorder, and my lfe has been anything but normal. I have probably gone through more in 17 years than most kids will experience in their entire lifetime. Why? Well, I have a rare liver condition called Alagille Syndrome (AGS). It is a complex disorder that causes abnormal development of organs like the liver, heart, kidneys, face, and blood vessels. I've had it all my life and it defines who I am today, and who I will be in the future.

When I was little I was small for my age, real skinny, and really shy. My face is shaped differently and I'm skinner than most people is, as a result of mal-absorption. I also itched. The itching is horrible, like being covered in mosquito bites and trying to itch them all at the same time, without it doing any good. I was teased constantly and relentlessly in elementary school, and it eventually got so bad that my parents were forced to switch my schools at the beginning of 5th grade.

The hardest, and also best decision I've had to make in my life was when I was 11 years old. My mom and dad asked me if I was willing to fly to Chicago to have a Partial External Biliary Diversion, or PEBD for short. I said yes in a heartbeat, and this decision literally changed my life for the better. I flew to Chicago in April 2002 to have the operation performed and was in the hospital recovering for about a week. The best part was that I stopped itching entirely as a result of the operation. I also grew several inches in height; I went for 4'7'' to 5'5'' in less than 4 years and gained weight, 64lb to 125lb in under 4 years as well. The only downside to the operation is that I have to wear an ostomy pouch to catch the bile that drains from a small hole (stoma) on my abdomen. Still, that doesn't bother me because I finally look more like other kids my age and I'm not teased about my condition, or looks any more.

As I've gotten older, my parents and I have noticed that I tend to get along better with kids who are older and a bit more mature than I am. I think this is because I was never really able to socialize