Bailey P. - Johnsonburg, PA - 2003
Crowned Homecoming Queen
On Friday, September 5th, 2003 the Johnsonburg Area High School Senior Class chose Bailey P. as their 2003 Homecoming Queen. Bailey, a 17-year-old senior at JAHS, has ARCI-lamellar ichthyosis She is the daughter of Roger and Tracie P. of Wilcox, PA.
Bailey's Perspective: "The Homecoming Queen for 2003 is - Bailey!" When my name was announced over the speaker, I was overwhelmed and in total shock. Every girl's dream is to receive a crown and it was coming true for me at that moment. A mix of emotions flooded my soul. It's hard to put my feelings into words. I will forever cherish the night of September 5th. You see, I was never popular in school, probably because of my Lamellar Ichthyosis. Before I started kindergarten, a couple of parents called the principal to ask him if he would take their children out of my class. Thankfully he said, "No!" I have been called names and laughed at. Every public place I walk into, people stare at me like I'm some strange creation. It hasn't been easy. That is why winning the title of Homecoming Queen was such a huge honor for me. At my school, the teachers vote to choose the candidates for the Homecoming Court. Then on the day of the crowning, the senior class members vote for the Queen. I thought I had a chance to get on the Court because I'm a good student, ranked second in my class. But I never dreamed that I could be chosen as the Queen! I felt inferior being on the court with five very popular girls, but I continued being my social, fun-loving, kind and friendly self. It must have paid off! My life hasn't always been filled with great accomplishments. I've had my struggles along the way. But through it all, I've learned to love myself, love others, and love my skin disorder! I wouldn't want my skin to be "normal" because it wouldn't be me! I believe that God gave me ichthyosis to teach me compassion and to be a role model for others. I want to be a missionary to Romania and work in orphanages helping kids who are lonely and feel unloved. I am thankful that God gave me a family who brought me up like a "normal" child, and I appreciate my close-knit group of friends who don't even notice my skin anymore. My advice to other teens and kids with ichthyosis is, "hang in there, learn to love yourself just the way God intended you to be, and love others even though they make fun of you." If you do, your life will be one exciting journey with many surprises along the way!
Mom's Perspective: Wow! How can I put into words something so special, so amazing, and so unbelievable? What an incredible moment! The flood of emotions was so intense; joy, shock, relief, pride, thanks, and so much more. Bailey's crowning was the completion of a long journey to "Release the Butterfly." Tears of joy flowed freely from everyone who had been a part of the process. Bailey was born on June 15, 1986, with lamellar ichthyosis. She was covered in a collodion membrane. The doctor who delivered her was not sure what was wrong, so at 20 minutes old Bailey got her first ride in a helicopter to a neonatal intensive care unit. The next day the doctor made the diagnosis of ichthyosis and she stayed in the NICU for two weeks. Bailey was quite the attraction when we got home. Rumors spread like wildfire around here, and everyone had to check her out. Everywhere we went, people stopped and stared. As Bailey got older, she became aware of this and would hide behind me. I grew tired of the constant stares and insensitive comments, so I started being just as rude to these nosy strangers. But one day I realized that my angry reactions were only hurting Bailey! I also realized that if she wasn't my child, I might do the same thing. After all, it's a natural reaction to stare at something you've never seen before. So we tried something new; when someone stares, we smile and wave! Most people are embarrassed when they get caught staring. And for those who won't quit, we introduce Bailey, explain what she has and give them a brochure about ichthyosis (available from FIRST). It hasn't always been easy. Bailey has been stared at, pointed at, and laughed at to the point of tears more than once. But it has made her stronger and more compassionate. Through it all, I kept reminding her that NO ONE is perfect, and that true beauty comes from within. God doesn't make mistakes, and she is a beautiful, special, and unique person created in His image - just like everyone else! Bailey has grown into a truly beautiful person who is kind, caring, and encouraging to everyone she meets. My advice to other parents is to love your child and accept them just the way they are. Remember that no one is perfect. They won't learn to love themselves if they sense that you are bothered by their skin or want them to be "normal." Everyone is good at something. Find your child's strengths, talents, and gifts, and then do all you can to develop and encourage them. Get support from other parents who have been through this. Get involved in educating your community about ichthyosis. The more people know the less likely they are to stare. Teach your child how to handle questions, stares or rude comments in a kind positive way. Remind them (and yourselves) that most people are just curious. Sometimes miracles hide. It is my prayer that you will realize the miracle you are holding in your arms and "Release the Butterfly" in your own child.
("Release the Butterfly" is a phrase we found in a booklet available from FIRST. Since then, it has been our goal to "Release the Butterfly" in every child with ichthyosis!)
Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officals endorse any treatments listed here. All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.