When I was a little girl I used to love to play outside. I live in the Sunshine State so there is plenty of fun in the sun. I would spend days at the baseball field watching my Daddy. Sometimes I would just lounge around in my raft and watch the birds. Mommy and Daddy would take me to Sea World or Disney for the day. Life was spectacular! Then everything changed and my life turned to a world of darkness! I was so little! I didn’t understand! So here is my story…..
At the age of 9 months my Mom started to notice that something wasn’t quite right. My skin was always dry and red no matter what she did. Mom and Dad bought every cream and potion you could imagine to make my skin “Baby soft” and nothing worked! So Mom started her quest. Her quest to find out what was wrong with me. We started with my pediatrician who always gave Mom a lecture about how she needed to use sunscreen on me not to keep me in the sun so long. She couldn’t understand because she did all those things and why weren’t they listening to her? So she went on to different dermatologist. My Mom and I spent so much time in the doctor’s office. Some of them were so mean. One doctor told her “She has the skin of an 80 year old woman. What did you do tie her to a tree all day and leave her there?” Mommy left there crying. She remembers this day well because when we were at the elevator I looked at her and squeezed her neck and said “Don’t cry Mommy it will be okay”. This wasn’t the meanest thing said to her or the last but it was a turning point. She wouldn’t give up on me. People would tell her she was over reacting being a first time Mom and all. Then Dad would get mad because she was spending all their money on different specialist. So a year goes by and we are still searching for an answer….
Daddy’s friend gave him the name of a pediatrician that had been in town for a while and he thought he could help. So we went. At this point I had four cancers on my head that two doctors were “watching” they thought they were just moles or something? So Mom tells the doctor the whole story and tells him she is in nursing school and these fours lesions are changing colors and growing! He shakes his head (Mom knows that look and just starts crying). He looks up and says I have a friend who doesn’t usually see children this small but he owes me a favor. Well guess what! We meet the man who saved my life!
Daddy drives us over to Dr. Stanley Cullen’s office in Gainesville and he wants to biopsy each lesion. Of course we have to wait for someone to go across town to get a papoose to tie me down because again he doesn’t see toddlers. Within a week he calls Mom while she is in the shower and tells her I have Xeroderma Pigmentosum. Then he says keep her away from all UV light, windows, sun, ect… Mom tells him she is on her way to get Dad so they can sit down with him and talk. Unfortunately, there wasn’t that much information on XP so my life suddenly just changed.
Daddy came home and put blinds and curtains up on all the windows until the tint man could come out. All I wanted to was peek out the window and watch the birds and Mom freaked out. Dad and Mom would always fight about which way to drive through town because of the street lights. I couldn’t go in the stores. I couldn’t go to the park. Back then there wasn’t a UV meter so they didn’t know what was safe. Safe was Dark. I just wanted to be able to play like I use to what was going on?
Next a sty popped up on my eyelid. Then another doctor said it was a cyst and needed to be removed. Since it was so close to my eye and on my face my Mom and Dad sought out the best plastic surgeon in town. When the doctor saw me all covered up coming in his office he scolded my parents and asked “Don’t you think her quality of life is better than the quantity?”. My parents looked at him and just politely asked him to do what they had come there asking him to do. Well guess what? When he got in there it wasn’t a sty or a cyst! It was cancer and he called my parents from the OR to tell them he had to remove more than he thought because it had started to spread. After my surgery my Mom taped up my baby dolls eye so she looked just like me!
As time passed on my pre-cancers kept popping up. I would go to the dermatologist every three months and every three months he would freeze and cut. Then he gave my parents some “wonder cream” it’s really called effudex, helps peal those babies right off (like a topical chemo). The terrible thing about effudex is when you use it, it makes your skin so raw and red. Sometimes when they would treat my little lips they would just bleed and I didn’t want to eat.
One day my Meme, my grandma, was watching TV and she saw this lady who had a suit that protected children like me so she immediately called my Mom at work. We contacted the lady to get me one so I could go outside without being wrapped up in a blanket. The suit was two thousand dollars. Mom and Dad were only going to use this to transport me back and forth to the doctor until the day I got it. The day I got my suit and went outside I saw a butterfly for the first time! I chased him around the yard for about ten minutes and at that point my parents realized they couldn’t keep the world from me. Although I was born with XP it wasn’t fair to keep me in a world of darkness. It only meant we had to be smart and keep me safe, kind of like outsmarting the Sun. We soon bought a UV meter. That was money well spent. I could go places I never dreamed of going before.
I eventually enrolled in a public school. The school tinted the windows in my classroom. My lunch was brought to my classroom where I usually ate with one of my classmates and my aid. My school bus windows were tinted and it had air conditioning to keep me cool on those hot summer days. Sometimes school was hard when other kids would point or stare. I can remember my aid telling the other children I was a princess and she had to keep me all covered up. That always made me smile. Recess was also hard when all the other kids would go out to play and I would have to stay in my classroom and watch a movie or read. I always put my sunscreen on every two hours to protect me from any ultra-violet light that may be in the classroom.
I excelled in academics. I took a test for Duke University when I was in the fifth grade! I always made fours and fives on my FCAT exams. After school I also found things to do. I enrolled in dance! My parents found things for us to do that were safe. We would go to the beach at night. Disney is open late. Oh, I got a baby sister and brother! They also have XP just like me!
Now I am in high school and I am still excelling! I am now in the Honor Society. I love high school! I go to gym first period then it’s on to the “shade room” all my teachers just rotate to me. So I am safe. I still have to put my sunscreen on every two hours (I hate it but it keeps me safe). My Mom’s favorite thing to say is “Your skin is mine until you are eighteen and maybe there after”. After school I go to dance. I take seven dance classes and I am a student intern! Teaching those little girls how to dance just makes me smile! I guess my road has been a little rough but it hasn’t kept me down and I am living life! I go to retreats every year with other XP kids. The camps are a different places so I get to see other states. The camp is sponsored by out XP Family Support Group which my family is very active in. My mom has so much admiration for this group she recently become one of their Board of Directors. I also attend Camp Dermadillo with my younger sister. Just the two of us hop on a plane and go out to Texas for a week of fun with other kids! It is awesome! I am not sure what I want to be when I grow up but one thing is for sure XP is not holding me back!