Hello reader(s),

 

It is Ella from 2025, and I thought I would update you on my life so far since BUTTERFLIES KEEP FLYING. I am 18 now.  After going to elementary school in person for 5 years, I transferred to an online school at home for middle and high school. I just graduated from it. We thought it would be more flexible for my needs and it was. 

 

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 shooting and hunting. 

 

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. 

 

Tom Ciarula is a volunteer at a rifle range. He looked at my hands and saw that I only have thumbs. He 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. He also built an extension for the trigger, because I couldn’t pull it back to fire. I just grip it with my thumb and pointer finger, pull back, and it fires. 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.

 

I’m still thinking about my future plans. I want to go into law enforcement of some kind, like a lawyer, detective, or criminal investigator. Right now, I’m taking a gap year because I want to learn some needed life skills first, like driving. Also, since BUTTERFLIES KEEP FLYING we have had new family members! My brother AJ is now 11 and my little sister, Maggie Jo, is 8 years old. 

 

That’s it for now. Maybe I’ll update you all later. 

 

Ella