To my younger brother, this is how I keep you with me

To: My younger brother, Aaron

From: Ben Koch

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Dear Aaron,

When we were six and seven years old, we went to Duke Children’s Hospital. We did not go for a basketball game or to get a tour of a college campus. We went to Duke to fight for our lives.

Just a year prior, I remember us singing and dancing together. 

One of our favorite songs was “I’ve Gotta Feeling” by Black Eyed Peas.

The lyrics in the chorus say, “I gotta feeling that tonight’s gonna be a good night.”

That song, in particular, got us really excited. Only a year and a half younger than me, you and I were more than brothers, we were best friends. 

Ben with his little brother, Aaron.

Together, we had fun and enjoyed life. 

However, in 2010, when you were just six years old, you started sleeping for days on end. You weren’t yourself and you were admitted to the local hospital. Soon after, doctors diagnosed you with Adrenoleukodystrophy (ALD), a rare incurable genetic condition that affects brain function. Dad’s research revealed there were only a couple of places in the world that could treat you, one of which was the hospital at Duke University in North Carolina. 

Mom and Dad went down there with you while our two little sisters and I stayed in New York with our grandmother and aunt. We didn’t know how long you would be down there. 

So, when you came back after a week, I thought that meant you were OK. 

However, when you came home, Mom and Dad took me outside and told me that they had to go back to Duke, but this time I had to go too. They didn’t know when we could or would come home again. 

It was a harrowing conversation for me, a seven-year-old kid.

Aaron, I, too, have ALD.

When we got to Duke, we went through a few weeks of tests, checking various parts of our bodies such as our lungs and our nervous system. We had numerous CAT scans and MRIs. For treatment, each of us had chemotherapy to wipe out our “bad blood” and immune systems, then were given stem cells from the umbilical cords of babies. The treatment alone was difficult. But as I started to get better, your health plummeted.

Aaron and Ben went to Duke for treatment.

In the hospital, our rooms were next to each other, so I was with you when you had a seizure and cried out that you were blind. As time went on, I watched you gradually lose your ability to walk, play, and hear. I wondered if that was in store for me. When I was finally able to leave the hospital for outpatient care, you had to stay. I spent hours with you each/every day, no matter your condition. We’d ultimately stay in North Carolina for another year.

Our friends and family wrote to us, sending their love and get-well-soon gifts. Despite your condition, we would FaceTime our loved ones that couldn’t travel to visit us.

I learned the guitar and magic and tried to entertain you hoping it would help you to see and hear again. While your condition was so bad that we couldn’t enjoy these hobbies together, I’ll always remember those days and the hope it brought. 

On December 13, 2011, we left Duke for good. I was feeling healthy, but you were not doing well. Not well at all. Mom and Dad wanted you home—not at your home away from home. 

Three days later, on December 16, you passed away at seven years old at our local hospital.  Because your disease progressed before mine, it prompted our parents to get me tested. The doctors diagnosed me at a much earlier point. Aaron, you lost your life, but you saved mine.

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Our whole family was distraught after you passed away. For me, it would have been easy to stay home and dwell on my pain and sorrow. Thankfully, our parents refused to let me do so. Instead, there was so much love within and around our family, which gave me the strength to not just live my life for myself but for you as well.

There was so much love within and around our family, which gave me the strength to not just live my life for myself but for you as well.

In the hospital, we crafted pins with people’s pictures on them. Our whole family has pins of you. To this day, whenever we take a family picture, we insist that there’s always a button of you. When I had my bar mitzvah, everyone in our family wore a pin with your photo. Underneath my gown at my high school graduation, I had a pin clipped to my shirt. In 2017, I went to the MLB All-Star game thanks to the Make-A-Wish Foundation. Aaron, I clipped you to my credential.

You may be surprised that I chose a baseball game for my wish because you liked sports, but I wasn’t really into them when we were young. These days, I love sports. I think that’s a part of you that is living within me. Since our time at Duke, my dream has been to one day be a front office executive for a sports team. I am working hard to make that happen – not just for me but for both of us…

In high school, I stayed busy in and out of the classroom. I was president of our region in BBYO, a Pluralistic Jewish youth group. Also, I volunteered for the Make-A-Wish Foundation. Throughout the last four years, I started to appreciate learning. I stayed up late and woke up early so I could do well in school.

To this day, when I need good luck for a big day or a test, I carry a Pokémon token because we both loved Pokémon – same with Kooky Pens. Remember the white pillowcase you loved so much? Mom cut a piece of it so I can carry it with me on the days I need a little extra strength or inspiration. 

Aaron, I am 18 years old and while I still have to get yearly tests and checkups, doctors are happy with my progression. I live a normal life and I am about to graduate high school. Last fall, I applied early decision to college. On the night I was expected to find out whether or not I got in, I visited you at the cemetery. When I got home, in a moment, months worth of stress turned to excitement and joy. On December 18, two days after the anniversary of your passing, I got accepted to Duke University.

Ben is attending Duke University for college.

I’m going back to the same campus where we walked around without hair and sapped of our strength. But this time will be different. I’m going to spend the next four years making lifelong friends and everlasting memories. For the first time, I am going to go to a Duke basketball game.

As young kids, we were at Duke together for the worst days of our childhood. Now, I am triumphantly returning for what should be some of the best moments of my life.

And I want you to know, just like I have every single day for the last ten years, I am taking you with me.

Aaron, I will never stop having fun and enjoying life with you in my heart and by my side.  

I am excited for what’s ahead and I’ve gotta feeling so are you.

We did it together! Go Blue Devils!

I love you and miss you.

Your big brother and best friend,

Ben Koch
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One thought on “To my younger brother, this is how I keep you with me

  1. Ben,

    What a powerful message of love and determination to carry on after losing a sibling. You’re courage to overcome your own battle while living a life fueled by the inspiration of memories of your brother is a great way to keep his spirit alive in you. I’ve also lost a sibling at a young age and I’d just like to say thank you for sharing your story and much continued success in your academics towards achieving your future career goals. Stay blessed in good health along your journey.

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