Treasure W. - Jackson, MS - 2012
Treasure is a beautiful 7-year-old girl. She has always loved the stage, be it for family gatherings or church. She wanted to do pageants because her big sister did them. I searched for pageants that judged talent and interview equally with beauty, and that also allowed little or no makeup. Her first pageant was in the Today's Girl system. Treasure was first crowned in Gulf Coast, then Mississippi Today's Doll. She eventually made it to the national pageant where she won 4th place and the academic achievement award.
Neither of our girls participate in sports, but both are very competitive. Competing in pageants has shown Treasure that she can do anything.
Treasure wanted to get into acting (again because her big sissy does it.) The first agent we worked with said Treasure would never work because of ichthyosis. She wouldn't even consider representing her. We severed ties with her and found Storm Agency in neighboring Louisiana. The agency took all 3 of our kids. Treasure’s older sister, Taylor is unaffected, and Treasure and her younger brother, Jackson, have ARCI-lamellar ichthyosis. The Storm Agency sent Treasure and Jackson on auditions just like any other kid. If they are the right age and the right body she submits them right along with the other kids. They have worked together on 3 movies and 2 episodes of HBO's Treme as siblings. And Treasure worked along side Catherine Zeta Jones as a sick kid in the movie Broken City. She loves to tell people Catherine said she is a star.
Treasure's daily routine is rather simple. We scrub her with a natural loofah every morning. Apply aquaphor and shea butter all over, then she gets dressed. I use a spray bottle apply jojoba oil to her scalp, brush and style. At night she soaks in the tub for 10 or 15 minutes. we bath her with the loofah again. After, we apply Tazorac some nights, and then aquaphor and shea butter. That's it. Once a week I use a small tooth comb to lift skin from her scalp and then wash her hair.
First grade wasn't an easy year because there were two children that took pleasure in being mean. But we went to the administration and it was handled.
There are times when she says she hates ichthyosis. Like when she is itchy or I'm doing her hair. Or when I tell her she can't do glitz pageants because the judges only want kids with clear skin. I make a point of being truthful in all that I tell her.
We try not to let ichthyosis define our lives. We believe she can do anything any other kid can do. She plays outside in the Mississippi heat almost every day. She just brings a water bottle with her to drink or pour over her head. She comes in when she really needs to cool off and goes back out when she is ready.
Tiffany (Treasure’s mom)
*Treasure has provided an update to her story here
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This information is provided as a service to patients and parents of patients who have ichthyosis. It is not intended to supplement appropriate medical care, but instead to complement that care with guidance in practical issues facing patients and parents. Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officials endorse any treatments or products reported 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.