1% Survival Rate | Teen Ink

1% Survival Rate MAG

October 19, 2013
3 articles 0 photos 0 comments

Favorite Quote:
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.

I was born with STXBP2, a genetic condition so rare that it doesn't even have a name. I call it “Trey syndrome.” For a baby to have it, both parents have to carry a gene defect that only affects people of Turkish-German descent. My parents never even knew they were Turkish.

The symptoms start to manifest at age three. Before my case, no one born with Trey syndrome had ever lived past the age of 10. My parents knew this but never told me.

The disease causes immature B cells. These fight infections by taking orders from T cells and using immunoglobulin (IG) to fight bacteria and viruses. My B cells produced very little IG. So every 40 days, from the age of three, I went to the hospital and had IG pumped into my body through an IV in my arm.

When I was five, I caught the Epstein-Barr virus, also known as mono. My immune system fought the virus and then could not turn itself off. It began to fight my internal organs. My doctors used massive amounts of steroids and chemotherapy drugs to shut my immune system down. This killed all my B cells.

I continued to visit the hospital every 40 days to be stuck with an IV, and I sat for five hours while IG and new drugs were pumped into my body. However, I was healthy enough to play baseball and soccer and take tae kwon do lessons. You couldn't tell anything was wrong with me.

At age 10, right after receiving my first degree on my black belt in tae kwon do, I got sick again. This began two and a half years of life inside a hospital. Two bone marrow transplants, two open heart surgeries, and countless other procedures later, I emerged on the other side of this nightmare. I am the first person ever cured of this disease.

The doctors said I cannot play contact sports because I suffered some brain trauma (I have mild seizures sometimes). I am small for my age, no longer the best soccer goalie in my school. My hair is so thin from the chemotherapy that you can see my scalp. When I take my shirt off my dad tells me I look like I fought in a war because I'm covered with scars from all the tubes doctors poked into me and sewed to my skin to hold in place. They opened my chest twice to fix my damaged heart; those scars go from my neck to my stomach. I had to learn to walk three times in my life, and I've endured intense pain that I can't even begin to explain.

However, I am the luckiest kid I know. I was given less than a 1 percent chance of survival. Most of my hospital friends, who had better-known diseases, didn't make it out. Their pictures are on the walls of the hospital in Atlanta as a memorial to their fight. My picture isn't on the wall.

I dedicate this article to Merrill King. She was my hospital friend and is now my guardian angel.

The author's comments:
A tale of survival.

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This article has 1 comment.

on May. 18 2017 at 6:30 am
SeekJustice BRONZE, Goulburn, Other
1 article 0 photos 14 comments

Favorite Quote:
"He is no fool who gives up what he cannot keep, to gain what he cannot lose." --Jim Elliot

"And what does the Lord require of you? To Seek Justice, Love Mercy and Walk Humbly with your God." Micah 6:8

this is a beautiful article, thank you for sharing it, well done. :) You have an amazing story.