WILCOX — Tracie Pretak of Wilcox and her daughter, Bailey, have been working to raise awareness about ichthyosis for 30 years, but still many people have not heard of this rare skin disorder. So when Tracie’s voice student, Ella Hagar, 10, of St. Marys, told her she was raising money for this cause at her school she was touched.
“I was so deeply moved by Ella’s efforts last year, not just to raise money through the dress down day, but her passion to educate her peers about this rare condition,” Tracie Pretak said.
People who have ichthyosis “have dry, scaling skin that may be thickened or very thin,” according to the Foundation for Ichthyosis and Related Skin Types (FIRST). Ichthyosis is a genetic skin disorder and there is no cure for it. It causes the skin to be very dry and crack, but there are ways to help manage the disease.
Hagar befriended Bailey, who was born with the disorder and has gone on to meet others facing the same challenge. Hagar was so affected by the obstacles people with ichthyosis face and their ability to overcome them that she has been trying to let other people know about it, too.
“I think it would be something really hard to go through,” Hagar said.
Despite the obstacles of the disorder, Bailey has found ways to do the things she loves, she said. Even though Bailey can’t sweat she just loves to dance. The stage lights were an issue because they cause it to get hot on the stage and Bailey could become overheated. To accommodate for this, she was sprayed with water to keep her cool, Hagar said.
Hagar said by spreading awareness the Pretaks are spreading their message that it doesn’t matter what you look like on the outside, it’s what you are like on the inside that matters.
Because she has taken such an interest in those affected by the disorder, the Pretaks have allowed her to help when they do tours to spread awareness. They have recorded a CD to share Bailey’s journey from insecurity to confidence and are doing a Release the Butterfly concert tour to help raise money for FIRST.
A Release the Butterfly tour has been performed in Johnsonburg and the surrounding communities for the past 15 years, but in 2015 they began taking their tour to places such as Mechanicsburg, San Diego, Calif., Long Island, N.Y., Providence, R.I., and more. The event includes music, singing, dancing and question and answer sessions. Their 2017 schedule is not complete yet, but Tracie Pretak said they are in conversations with potential host families in Philadelphia, Pittsburgh, Lancaster, Baltimore, Md., Tennessee, North Carolina, Georgia, Seattle, Wash., and San Jose, Calif.
