Alex: My twin brother and I each had a bleeding episode right after we were born. The doctors ran all sorts of tests and determined that we both had hemophilia. There’s no history of hemophilia anywhere in our family; it was due to a genetic mutation.
Hemophilia probably impacted me the most at school — specifically at recess, when kids play intense games like football, soccer, and gaga ball. I had to sit out most of the time because I didn’t want to get hurt. But that led to opportunities for me to connect with other kids and broaden my friend group, which was really nice.
Max: Alex and I have been in Scouts since we were 6 years old. We’re now 17. We can do everything other Scouts do, we just need to plan a little more, which is fitting for Scouts, since the motto is “Be Prepared.” For example, we went on a weeklong trip to Philmont Scout Ranch, a 214-square-mile stretch of rugged terrain, based in the Rocky Mountains in northeastern New Mexico, where we climbed to the top of Mount Baldy.
Alex: We planned for Philmont for two years. So much of the trip was about seeing how far we could go, but safely. We wanted to know that having hemophilia wouldn’t limit us.
Max: Before we left, we had to think everything through. For example, we needed enough medicine, padded containers for the fragile vials, and special packs to keep the medicine at room temperature. In addition, we needed to figure out how we’d infuse ourselves safely in the middle of the wilderness. We used camping chairs to keep us off the dirty ground.
Alex: Our troop was prepared as well, since we’d sat down with them years ago. We’d explained our condition, and we described how they could help if necessary. For example, I said, “If you see me bang myself really hard, or it looks like I’m hurt in any way, tell my dad.”
Max: It was really nice to know that I always had a huge community around me. And it’s helped to give me direction. One of the greatest things that Scouting America offers is merit badges. A big one for me was the First Aid badge, where I grew to love medicine. My merit badge counselor said I’d be a really good surgeon one day, probably because I’ve been living the First Aid merit badge my entire life! Right now, my plan is to do some sort of pre-med major when I go to college.
Alex: Hemophilia has presented challenges, but it’s also brought me so much joy in different aspects of my life that I would have otherwise never been able to figure out. It was amazing to stand at the top of Baldy and take in the surroundings. I want people to know that hemophilia doesn’t have to rule their lives. I’ve gone beyond anything I ever thought I could do.