Hello reader(s),

 

It is Ella from 2026, and I thought I would update you on my life so far since BUTTERFLIES KEEP FLYING. I am 19 now.  After going to elementary school in person for 5 years, I transferred to an online school at home for middle and high school. We thought doing school online would be more flexible for my needs and it was. 

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Before, it was difficult juggling school and everyday life with EB. I would get home in the afternoon then have to do a bandage change immediately. After a long (about 2 hours) bandage change, I would have to stay up really late doing homework. Online school gave me that flexibility of being able to balance school with EB life. It also gave me time to take up some hobbies, like sport shooting. I got to compete in the Junior Paralympics.

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My dad is a hunter. I always wanted to hunt too, but thought it was physically impossible not just because of my skin, but my hands. A common trait with EB is our fingers will fuse together to look almost like mittens, which makes it difficult to do simple tasks almost anyone can do such as opening things like containers and holding and gripping certain things. Large or thick objects can be almost impossible to hold without fingers gripping them, right? That’s why I thought I would never be able to shoot, because I can’t physically hold a rifle. But then I met a guy who adapts rifles for wounded warriors. 

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Tom Ciarula is a volunteer at a rifle range. He saw that I only have thumbs, and adapted a whole mechanism that made me able to shoot a rifle without lifting a finger… kinda literally. He built a special table that allows me to prop a rifle on top and steady it to aim, too. Pretty cool, I know! With the special table I was able to go to the Junior Paralympics for air rifle in 2019, 2021, and 2022 and win medals.

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In March 2026, after years of waiting, I went to Italy for a Make-A-Wish trip. I chose Italy because of my love of food and history. I tried so many delicious foods, including pasta, seafood, and of course, gelato. My favorite food was the fettuccine Alfredo. Unlike the American Alfredo sauce that has cream, milk, garlic, and a bunch of other unhealthy things added, this was simply butter, parmesan cheese, and pasta. It was one of the best things I’ve ever tasted in my life! 

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My family (mom, dad, my brother and sister) were with me on the trip. We took cooking classes, and we also toured the Colosseum and the Vatican. It was an amazing trip. 

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Fall 2026 I started taking online college courses. I'll keep you posted on my school adventures. 

That’s it for now. 

 

Ella