Aaron’s Speech from the 2020 Congressional Networking Reception

My parents first found out that I had sickle cell when they received a letter in the mail from the Sickle Cell Disease Association of Michigan, which proudly welcomed them to the society! Now for my parents, this was quite the shock. I had gotten tested for sickle cell at the hospital, but somehow the results got mixed up.

While my parents were shocked, they were also prepared. My parents knew that they were sickle cell carriers and could have a child with the disease. My parents probably understood the genetic odds of this better than most because my mom is a doctor. And my mom had learned genetics from one of the best: NIH director Dr. Francis Collins, who was my mom’s genetics professor at the University of Michigan.

In that class, my mother would have learned that if she had a child with another sickle trait carrier, there would be a 75% chance that the child was healthy , and a 25% chance that the child had sickle cell disease.

Even with that risk, my parents decided it was worth it and rolled the dice… I’d like to think that I’m a pretty good outcome!

After having me, my parents had two more children…. My little sister Alana who has the disease, and my little brother Luke, who doesn’t and would one day change my life.

Learning I had sickle cell disease changed everything for my family. Managing my sister’s and my disease became a big part of what our family life was about.

My disease made me prone to all kinds of infections, and I was sick a lot. From age 4 on, I also started experiencing the pain crises associated with sickle cell disease. In sickle cell, some of the red blood cells are shaped like a crescent moon. The irregular shape causes the cells to not be able to carry oxygen as well, and they can sometimes get stuck in blood vessels and clot. Whenever this happened, I experienced pain.

The pain of a sickle cell crises can vary from person to person, but it’s generally excruciating. The pain can be debilitating and can last from hours to days, depending on the severity of the crisis.

Unfortunately, the pain crises are not just painful; they’re also dangerous. Each pain crisis can cause mild or even severe organ damage – even death.
My family and I learned quickly that I needed to prevent pain crises at all cost. That’s not always easy because pain crises can be brought on by all kinds of things – not drinking enough water, cold temperatures, hot temperatures, physical exertion and even stress. This meant that I often would avoid activities that others did for fun: swimming, skiing, going hiking, playing sports and working out. Because I needed to stay hydrated, I always had to carry water bottles with me way before this was cool.

The older I got, the more frequent my crises became. I went from having them once every couple months in middle school to once a week in high school and during my first year of college. The most severe episodes were ones where I had clots in my lungs. This happened three times in my life: at age 4, 8, and 19.

As a freshman in college in Los Angeles, I became a pro at managing my crises. Since a lot of my episodes happened around 4 or 5 in the morning, I would wake up in pain, chug some water, take some medicine and then pray that the pain would go away before my first classes at 8 or 9. Sometimes it helped; but often times it would not, and I missed out on many classes and extracurriculars that made college life exciting.
Even with all these difficulties, I finished that first semester with a 3.8 GPA and a significant amount of exhaustion. I began to wonder if it was even possible for me to make it through the entire year.

However, an even bigger wonder awaited me at home over winter break. My parents ambushed me as I was leaving the house to get a haircut one day.

They sat me down and told me that my younger brother, Luke, was a perfect stem cell donor match for me and that I qualified for a stem cell transplant trial at the NIH – a procedure that could potentially cure me and change my life.

My parents thought of this as the perfect solution to years of pain and misery, and, possibly, worse to come. But the thought of going through a stem cell transplant left my head spinning. As I got my haircut, I somehow had to come to terms with the dueling emotions that the thought of going through a transplant evoked. On one hand, there was joy and hope, but on the other, there was fear and dread.

Unable to decide how to proceed, I returned to school in the spring. But the ruthlessness of my disease, my desire to become a teacher and, one day, have a family of my own, eventually led me to agree with my parents: the NIH stem cell trial was my best and only chance to move forward.

Here is where the Children’s Inn enters my story. My mother, my brother and I stayed at the Inn for 1 month before my transplant, and my mother and I stayed for 3 months after my transplant. In the month before my transplant, the Inn provided many fun activities that helped ease the anxieties of the upcoming chemotherapy and radiation I would have to go through. Some of my favorite activities included sailing through the Potomac bay on a schooner, watching a live performance of the Harry Potter score and taking trips to site see on the Mall.

After my transplant, staying at the Inn was the best place for me to recover. I started feeling new energy and began working out in the Inn’s Fitness room. Putting in that physical work without the fear of pain was miraculous.

During my three months, I made friends with other young adults who were going through transplants and other treatment for sickle cell anemia, cancer, immune deficiencies and other diseases. We hung out, supported one another and some of us still keep in touch even today.

We participated in The Inn’s young adult activities – going to movies, checking out some of the best restaurants in Bethesda and even going bowling.

Children’s Inn family dinners are typically served by volunteers, and included NIH staff, among them my mom’s former teacher Dr. Collins. While Dr. Collins served us dinner one night, my mom and I thanked him for the new chance at life that the NIH and The Children’s Inn gave me.

Thanks to your support of NIH research and The Children’s Inn, I was able to finish school in 2019 and make my dream of becoming a teacher come true. I now teach middle school science in Los Angeles. My students say hi, by the way.

I am forever grateful for the new life I have – a full, rich life and the energy to work hard — and play hard. I now enjoy traveling to colder destinations. I recently went sightseeing in Seattle with my girlfriend, hiked and camped in Yosemite Park and threw snowballs in the Sierra Nevada mountains with friends.

These are things I could have never done without serious and painful consequences in my former life, and they are things I also wish for my younger sister, Alana, to experience.

Unlike me, my sister doesn’t have a matching stem cell donor, and her sickle cell pain crises, while not as frequent as mine, leave her hospitalized at least twice a year for weeks at a time and have caused significant organ damage.

That’s why my family and I are so grateful for the NIH Cure Sickle Cell Initiative, which seeks to find a widespread cure for sickle cell disease through gene therapy. We believe that gene therapy is the best option for sickle cell patients, including my sister. It’s what we’re hoping for.

Your continuing support of NIH research and The Children’s Inn is vital. It’s vital for me, my sister and the millions of people with sickle cell and other devastating diseases around the world whose best hope is ongoing medical research funded by the NIH.

Thank you for letting me share my story with you. Good night!