Mikela

I was born with gastrointestinal issues, half a vertebrae, scoliosis, an extra set of ribs (and a missing rib, so +1 net total), and a grade 4 hypoplastic thumb. I had 3 surgeries during my first year of life, and 5 to date to deal with VACTERL.

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When I was in elementary school, I was super ashamed of anything that made me medically different. When anyone pointed out my thumb, I freaked out. When people noticed my back brace, I flipped and wore baggier clothes. In middle school, I was even more stressed about people noticing my back brace and thumb. I wore multiple jackets in 90-degree heat just to hide everything that I was nervous about.

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In high school, I started moving towards accepting myself and my condition. I had surgery on my thumb freshman year, so I answered any questions related to it. I told a group of my theatre friends about VACTERL freshman year, and they were so incredibly accepting. Since then, I've tried to be more of a self-advocate and educator.

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I graduated high school in 2019 with highest honors while being heavily involved in my school's theatre program. I'm attending college with an intended major in politics and a potential minor in theatre. I have also been involved in Girl Scouts for 12 years, going so far as to earn my Gold Award for rare disease support and awareness.

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If you're reading this and just starting your journey, I want you to know that it gets better. Chances are your child won't remember a big chunk of surgeries or the things that are scariest to you right now. It's a different life to navigate, but it's well worth it.

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As odd as it is to live with VACTERL, I wouldn't change it. I have no idea who I would be without it, but I do know that I am far more empathetic because of it. Everyone is different, and I didn't need to work to find what makes me different.

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It really does get better.