William: Simplex 

My name is William Bergen-Barlow, I’m 16, and I live with EB Simplex with Plec.

For the first 14 years of my life, I didn’t really understand what I was up against. I knew I had EB, but I didn’t know the full story until I was re-tested when my mom was expecting my baby brother. That’s when I learned about the exact mutation, and within a year, my whole world changed.

I went from just having fragile skin to becoming skin and bones, losing most of the muscle in my upper body. I ended up spending almost two years in the hospital, trying to figure out what my new normal would look like. On top of EB, I also deal with scoliosis, myasthenia gravis, and other complications. At one point, all of these complications almost cost me my life. I had a scary trip to the ICU that nearly kept me from ever coming home, but I fought to be here—just as hard as I want to keep going. Even with everything, I don’t let it slow me down.

That baby brother I mentioned—he’s healthy. He’s a carrier, but he doesn’t have EB. He keeps me going and makes me fight harder to survive, because I want to be here for him.

These days, I live part of my life in a wheelchair, and I have a permanent NG feeding tube. I don’t really know what my future looks like. I missed out on two birthdays, two Christmases, and almost everything a normal high schooler would get to experience. But after all that time in the hospital, I finally got to come home. Now, with a team of 17 different people coming in and out every week to help with my care, I’m adjusting. It’s not easy, but being home and being a big brother again makes it worth it.

When I think about the future of EB, I hope for a treatment for all types. I want to still be here when that day comes, to be part of the success, and to live without EB being one more thing to worry about.

For my own future, I want independence. I want to figure out what I want to do with my life. One thing I’ve discovered through this experience is my passion for ancestry and genealogy. I love learning about where I came from and the idea of possibly meeting family I’ve never known. I want to travel. I want to live, to see and do everything I can, and to spend it with the people who mean the most to me.

Most of all, I want to raise awareness about EB. Being in the hospital for so long showed me how few people really know about it. Being a medically complex kid is hard—not just for us, but for the parents who fight beside us every day. I honestly don’t know how they do it. That’s why I want to use my voice to make things easier, not just for kids like me, but for the families who love and care for us.

#EBStrong​