Andy’s Perspective

Finding NEMO

Rough Beginning 

Rough Beginning

I was born in Mexico City, Mexico, in 1999. My parents say that when I arrived, I was a healthy baby. That didn’t last long, though. I had my first fever when I was one day old. By the time this picture was taken, I was in the hospital for the third time, this one with a meningitis infection. My doctors already thought something must be wrong with my immune system, but no one knew what it was.

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Hospitals, Hospitals

I stayed at a lot of different hospitals before I came to Children’s. The first one where I spent a lot of time was Centro Medico ABC in Mexico City. They saved my life several times when I was a baby, but in the end, they didn’t have the technology to discover what was wrong with me. For that, I needed to come to the U.S.

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I also stayed for a while at the Children’s Hospital of Denver, in Colorado. There, they gave me some advanced tests and helped me through an infection. But they still couldn’t figure out what was causing my health problems.

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I finally came to Children’s Hospital in September, 2000. My Papa says he knew right away that it was the right place for me! Everyone seemed to know what they were doing, and they all seemed to understand what it was like to be a sick kid in a strange place. In the end, he was right – this was where I would finally get better.

OrangeSolving the Mystery

Solving the mystery

My doctors were perplexed. They could tell my immune system wasn’t working properly, but my problems didn’t fit the usual pattern. Then one of my doctors, Dr. Jordan Orange, thought came up with a possible answer. He suspected that a particular part of my immune system called Natural Killer cells probably weren’t working for me. But he didn’t have enough information to tell why they were failing.

Then another Children’s doctor, Dr. Stephen Gellis, pointed out some new clues. I had cone-shaped teeth and very thin hair. I also don’t sweat and have trouble with my stomach. Together, they meant I have a rare, inherited disease called NEMO. But although NEMO causes all those things, it usually doesn’t affect peoples’ immune systems. What was going on?

Finally, Dr. Orange found the answer. Working with other scientists, he discovered that I have a version of NEMO that deactivates my Natural Killer cells. Lucky me – I had a condition so rare that I was just the second person ever diagnosed with it! Fortunately, knowing the source of the problem also suggested a way to fix it.

 

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Sofia to the rescue!

Once my doctors figured out what was wrong with my immune system, they knew how to fix it. A lot of immune cells get made inside your bone marrow, by special cells called stem cells. Mine were churning out defective Natural Killer cells, so to make me better, the doctors needed to replace them with healthy cells from someone else. But in order to work, that person’s cells had to match mine almost exactly.

Unfortunately, finding a person with matching stem cells turned out to be too hard. Instead, my parents found another way. They had always wanted a second child, and they knew that a sibling’s stem cells would have a good chance of matching mine. So they decided to try it. On March 15, 2004, my baby sister Sofía was born. She was beautiful, she was healthy, and, luckiest of all, her stem cells matched.

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By October, my doctors were ready to transplant some of Sofía’s stem cells into me. The operation went well, but the process was really tough. In order for the new cells to survive, the doctors had to kill all of my old stem cells. That meant that I basically had no immune system until the new cells got to work. For two months, I was constantly sick.

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I got through it! On November 19th, we celebrated my Engraftment Day – the day the doctors were sure that Sophia’s cells had settled in to my body. I wasn’t completely well yet, but I was on my way.

Going Home

Going Home

On December 11th, 2004, the day we were all waiting for finally came: I was going home! My immune system wasn’t completely healthy, but it was strong enough – and getting stronger by the day.

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Over the months and years that followed, my immune system gradually got stronger. Today, I’m just about as healthy as any other kid. I go to school, play soccer, and can do everything else other kids do. Pretty amazing, if you think about it!

 

 

 

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