A Vessel for this Vapor Life
“What happened to your leg?”
Strangers ask me this weekly, if not daily. I became an amputee two weeks before my ninth birthday, and even after twenty-one years, it’s still a hard question to answer. Not because I struggle with what happened, but because the questioner is usually looking for a short answer like cancer, a car accident, or “I was born this way.”
My story is about so much more than the loss of my leg.
I was born healthy, with two arms, two legs, ten fingers, and ten toes. Soon after that, my life became about doctors, hospitals, and illness. By the age of four, I had already battled spinal meningitis three times; suffered a stroke, seizures, and scarlet fever; had tubes inserted in my ears eleven times, had my mastoid bone removed, had an abscess the size of a softball in the lymph nodes of my stomach, and more. My body continued to develop horrible, life-threatening ailments, and no one could figure out why. We traveled the country looking for a doctor or hospital that could help, but we kept being turned away. We were told time and time again that modern medicine wasn’t advanced enough to help my body.
Several more years went by and the infections seemed to be occurring less often. I was finally somewhat healthy. Then, two weeks before my ninth birthday, I was back in the hospital fighting for my life. Doctors told my parents I had two massive and rare infections (gas gangrene and clostridium septicemia) that were spreading throughout my body. They were forced to make a decision: let me die, or doctors could try to amputate my leg, giving me a less than three percent chance to live.
This was the ninth time my parents had been told I wouldn’t live through the next hour, but for them there was no question. Surgeons amputated my left leg and hip in an effort to try to stop the infection. After two very intense weeks in the ICU, I awoke from my coma. I had survived!
During the two months I was hospitalized, our search for a doctor became our top priority. There had to be someone, somewhere who was willing to try to figure out why I continued to get these life-threatening infections. Finally, a doctor at the hospital told us about a research hospital in Bethesda, Maryland called the National Institutes of Health. The NIH’s goal is to acquire new knowledge to help prevent, detect, diagnose, and treat disease and disability from the rarest genetic disorders to the common cold.
It sounded like our dreams were about to come true; we’d found a hospital that would try to help me. But there was a problem. They had never really studied undefined diseases before. At their request, we sent my information. After what seemed like an eternity a Dr. John Gallin decided he would take a chance on my rare case. My family traveled back and forth to Maryland for the next fourteen years to see Dr. Gallin and his team.
During those years, I underwent hundreds of medical tests–crazy things like having my body pumped with toxins to see how my system would react. Then there was the blister study where my forearm was hooked to a machine that would form blisters, after which the skin covering the blister was cut to expose the raw flesh beneath. Then, on top of each blister, virus cells were injected to see how my body would react. Those are just two of my favorites (if you can have favorite medical tests). These don’t even include the gallons of blood I have had drawn for research.
Over the span of those fourteen years, it didn’t seem like we were getting any closer to a diagnosis, until Dr. Gallin called one day and said, “We finally know the basis of Amanda’s problem.”
IRAK-4 is a genetic mutation, and it turned out to be the diagnosis we had waited twenty-two years for. What Dr. Gallin discovered is that when my body is exposed to an infection, my white blood cells don’t receive the signal to fight it off. Because I don’t exhibit normal symptoms of illness, like a fever, by the time my body recognizes the illness, I can already be critically ill.
IRAK-4 is caused by two genetic defects in combination, each of which I received from one of my parents.
As it turns out, I’m the only person in the world with my exact genetic mutation. The odds of my parents, who have these defective genes, meeting, marrying, and having children were one in a million. And the odds of me having the IRAK-4 gene mutation were even more astronomical.
You can probably see why it’s so hard for me to respond when people ask, “What happened to your leg?”
“For I know the plans I have for you, declares the Lord, plans to prosper you, not to harm you to give you hope and a future.” (Jeremiah 29:11)
This is my life verse, the verse that helps me make sense of things. Only God knew what was before me from the very beginning. He created me, knowing I could endure whatever obstacle he put before me and emerge stronger. But not until recently did I figure out that my mutation wasn’t only making me stronger, it was also bringing me closer to the Lord and deepening my faith in him.
I know I can’t do anything without Christ, but as Philippians 4:13 says, I can do all things with him! After all, he chose me! He has given me a story to tell—a living example of the love and healing power of his son, Jesus.
My medical journey is not over. It’s been twenty-one years since I became a part of the NIH family. There is no treatment or cure for IRAK-4, so I’m still being studied. From the ongoing research into IRAK-4, they are learning more about other diseases like lupus, heart disease, arthritis, and certain types of cancer. Because of my mutation, other diseases that millions suffer from are better understood, and I’m blessed to be a part of it. I will continue to donate my living body to science. It is, after all, just a vessel for this vapor life we have been given, and we are supposed to help our brothers.
I will continue to seek the life God has for me, whatever it looks like, and even though it gets tough sometimes, I remind myself that it isn’t about me; it’s about him and what he has planned.
Mandy Young is a southern social butterfly, who loves her family, friends, sweet tea, the color pink but most of all Jesus. She travels the country sharing her life story and the challenges of body image. Mandy has been featured on national television shows and countless newspapers and magazines and can be found over at MandyYoung.com.
