BAILEY PRETAK: You look in that mirror and realise you know, maybe the skin isn’t what I wanted, but it’s who I am. BAILEY PRETAK: “Ugly”, 20 years ago if you ask me to describe myself, ugly would have been my answer. I might have used insecure, shy, even worthless too. I was called ‘scaly Bailey’ and I was moving by exclusion, always on the outside looking in. BAILEY PRETAK: I am a motivational speaker and the funny thing is if you would have told me probably even three years ago that I was going to do that I would have laughed. BAILEY PRETAK: I realised I have a story to tell. BAILEY PRETAK: When I was born they immediately knew something was different with me because my skin was very red. BAILEY PRETAK: They figured out that I have lamellar ichthyosis – which is a rare genetic skin condition that basically my skin sheds all skin cells off too slow and causes the build-up of dry scaly-flakey skin. BAILEY PRETAK: And there is no cure for it. BAILEY PRETAK: I remember when I got to kindergarten that parents actually called the principle and wanted their kids to get out of my class and people wouldn’t touch things I touched. BAILEY PRETAK: I just didn’t fit in anywhere. I almost felt like I had to wear a mask to cover up who I really was. BAILEY PRETAK: To even to this day is constant stares; rude comments like didn’t you mother ever teach you about using sunscreen. As I grew up I got more shy and insecure and I feel like this picture really captures that and how I would hide behind my mom. TRACIE PRETAK: If we go somewhere and I see someone staring I automatically just want to jump in front of her and somehow protect her from those rude stares. And I will say for while I got really nasty and there was times when people would stare and I would get, even if it was a child, I would get right down on their level and stare right back and so they would see what it would feel like. I came to realise that part of her insecurity was me and my reaction to these rude people. And so we decided to change our M.O. and when people stared, we would smile and wave. BAILEY PRETAK: The biggest complication is I cannot sweat. So I have to take a lot of precautions in the summertime when it’s hot and humid. BAILEY PRETAK: Even something as simple as a fever is life threatening. If I do have a fever, I have to be covered in ice basically to get my body temperature down as fast as possible. BAILEY PRETAK: For me in particular, I guess the skin maintenance has just become such an everyday part of my life. It’s probably takes me about half an hour 45 minutes in the morning. BAILEY PRETAK: It’s not as easy as it once was. BAILEY PRETAK: Before I go to bed, I put ointment in my eyes because my skin is actually so tight around my eyes that it causes my eyelids to turn inside out and that’s what the red around my eyes is. So I have to do that just to keep my eyes from getting ulcers. BAILEY PRETAK: Media industry sometimes portrays that you have to be a certain size or look a certain way or have flawless skin and it came from the performing arts, especially dance – a place where I could really be myself and express who I am and people didn’t see my skin, instead they saw Bailey the dancer. BAILEY PRETAK: A couple of times a week I actually teach dance. ABIGAIL MOSIER: I have known Bailey for a while now and I met her through dance. ABIGAIL MOSIER: I love taking class from her you know, she is so inspirational. You come into class and no matter what kind of day you are having; she automatically just brightens up the room. BAILEY PRETAK: I do have confidence in myself now. It came over the course of many years. It wasn’t an overnight transition. BAILEY PRETAK: Back in 2014, I actually decided to compete in a beauty pageant. It’s something I have always wanted to do. I always felt that I had no place in that world because I wasn’t the typical beauty pageant. So I took on the challenge. I had no clue what to expect in nationals because that was only my second pageant ever and I finished first runner- up. These ones are from my various experiences at the pageant. One of them is actually Miss Congeniality, I won that at my second nationals. TRACIE PRETAK: I didn’t know how the pageant world would accept it but I have raised her to be confident because I wanted her to know that she was special and unique. TRACIE PRETAK: In the end it turned out that she actually taught them what the true meaning of beauty really is. TRACIE PRETAK: When I look back on the little girl that used to hide behind me everywhere we went. TRACIE PRETAK: To see someone who wants to share her story with the world because she believes she can make an impact, how can you not be proud of that? BAILEY PRETAK: If a doctor would call me up right now and say, “Bailey, great news. We finally have a cure for ichthyosis. We want you like front of the line to take it. Would you want to?” You know, honestly I would say no. BAILEY PRETAK: And that probably would surprise a lot of people. But my skin by no means defines who I am. It’s helped make me who I am, it has shaped me. I feel I am a much more compassionate person because of it.