Lucy’s Story

Lucy's Story Thriving With EB

Lucy Thriving With EB

We are absolutely thrilled to release Lucy’s story our 12th and final video in our ‘Thriving with EB’ series. Lucy, originally from Texas, travelled all the way from Scotland (where she is studying at the University St. Andrews) to join us at our Kaleidoscope Gala as a guest speaker. She is a shining example of what it means to be thriving with EB. Her story embodies our core values at MiaThrives of friendship, purpose, community, and celebration. Despite the challenges she faces daily, Lucy is living her life to the fullest, pursuing her passion and reaching out to encourage the next generation of Butterfly Children. We’re so proud of you Lucy and thankful that you are part of our community.

You can watch the full video of Lucy’s Story here (or down below).

Lucy’s Story

I was fifteen, I wanted to wear a skirt without people telling me I was brave. I wanted to put on a skirt on a Texas day and just be a normal girl and I couldn’t do that. Based on how I presented myself people would always say something to me. And I cried to my mom in the car outside of a Dairy Queen and I said I wish I had normal legs. She said, I know you do, but you don’t. So you need to be okay with it and you need to find a way in yourself to be okay with that. She’s right. You know my scars are always going to be there. So I need to be okay with them.

My biggest thing is my education.

I’ve always, always been very passionate about learning. And that’s because I was really sick as a kid. Therefore, I stayed home from school a lot and I got tired of watching cartoons. I had to miss school but I didn’t want to miss learning.

I realized that learning and my ability to learn was the one thing EB couldn’t touch. It could take me as far as I wanted it to and so that’s what I plan to do. I saw that for once in my life the effort I put into something that wasn’t my body was finally, you know, hard work paid off. For once in my life, I was working hard on my body every single day and it was amazing to see that I could control this and I could control the outcome and all the hard work I’d done since I was a child missing school was paying off.

I graduated high school early.

I applied to study the foundations of western art at Sotheby’s Institute of Art and the method and practice of archaeology at Birkbeck College in London. The Sotheby’s director told me I was the youngest person he’d ever accepted into the Institute. I was seventeen. I loved it, I loved reading, I loved learning, I loved finding out more about the world and about history.

It was very powerful.

I was chosen to give a TEDx talk at the University of St. Andrews which is my university I go to. It was amazing. That has really started the snowball effect of my advocacy and I realized the power of my words. I could see my scars as something I’m fighting against or I could see my body as something that’s working to keep me alive. Which is better a mark of shame or I’m lucky that I get to display my strength on my body.

My name is Lucy Beale Lott and I am thriving with EB.

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