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posted: 12/15/2012 8:00 AM

Cary girl gets haircut, sheds stigma at the same time

Cary girl donates hair to help shed stigma of her disease

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  • Kelly Whistler grins as she watches daughter Kayli get her hair cut by stylist Gina Coleman Friday at Blush Salon in Crystal Lake. Kayli, who has Trisomy 18, is donating her hair to Wigs for Kids.

       Kelly Whistler grins as she watches daughter Kayli get her hair cut by stylist Gina Coleman Friday at Blush Salon in Crystal Lake. Kayli, who has Trisomy 18, is donating her hair to Wigs for Kids.
    Christopher Hankins | Staff Photographer

  • Before getting her first haircut Friday, Kayli Whistler, who has a genetic disorder called Trisomy 18, has her nails painted at Blush Salon and Spa in Crystal Lake.

       Before getting her first haircut Friday, Kayli Whistler, who has a genetic disorder called Trisomy 18, has her nails painted at Blush Salon and Spa in Crystal Lake.
    Christopher Hankins | Staff Photographer

  • After Kayli Whistler's first haircut at age 3, she gets a big kiss Friday from her mother, Kelly, at Blush Salon in Crystal Lake. Twelve inches of Kayli's hair will be given to Wigs for Kids in Westlake, Ohio.

      After Kayli Whistler's first haircut at age 3, she gets a big kiss Friday from her mother, Kelly, at Blush Salon in Crystal Lake. Twelve inches of Kayli's hair will be given to Wigs for Kids in Westlake, Ohio.
    Photos by Christopher Hankins/chankins@dailyherald

  • Kelly Whistler holds daughter Kayli's face as stylist Gina Coleman shows off the 12-inch section she cut from Kayli's hair. Kayli, 3, has a 10 percent chance of living and doctors said that upon her death, she couldn't donate any organs. Kelly is donating Kayli's hair to Wigs for Kids in Ohio. Coleman works for Blush Salon in Crystal Lake, where the event took place Friday afternoon.

       Kelly Whistler holds daughter Kayli's face as stylist Gina Coleman shows off the 12-inch section she cut from Kayli's hair. Kayli, 3, has a 10 percent chance of living and doctors said that upon her death, she couldn't donate any organs. Kelly is donating Kayli's hair to Wigs for Kids in Ohio. Coleman works for Blush Salon in Crystal Lake, where the event took place Friday afternoon.
    Christopher Hankins | Staff Photographer

 
 

By donating some of her hair to a good cause Friday, Kayli Whistler was also hoping to shed a certain label that has followed her throughout her young life.

Kayli, 3, of Cary, has Trisomy 18, a disorder that resulted in a division error in chromosome 18. Instead of two chromosomes, she has three. The extra material in the chromosome affects development.

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When Kayli was born, doctors told her mother, Kelly Whistler, there was only a 10 percent chance her daughter would survive to see her first birthday.

Kelly Whistler said many doctors have told her Kayli could not be an organ donor because of the extra chromosome. Kelly also said doctors at many hospitals have refused to treat Kayli's various ailments because of the disorder. By donating her own hair -- four ponytails about a foot long -- to Wigs for Kids, Kayli is doing her part to contribute to society.

"We were told ... her life is worthless and her organs are worthless, so by doing this I want everyone to see her as a hero and a warrior, not as Trisomy 18 and not as worthless," Whistler said. "No matter the challenges in our own life, we are all worthy to somebody. She's giving hair to another warrior, somebody else who's fighting."

In doing so, the little girl embarked on today's "Kayli's Krusade to Kut the Worthless Label."

Kayli had a highly functional version of the disorder, but when she was 4 months old she suddenly went without oxygen for 32 minutes and her body shut down and hasn't been able to recover, her mother said.

The aliments Kayli suffers from are as a result of her brush with death, not the diagnosis, Whistler said. Kayli can't walk or talk, though she can communicate and recognizes her family and her nurses.

"Her body's not as strong as her spirit, and it's our job to help her body be strong enough for her spirit," said Whistler, adding that she has three other special needs children.

The hair donation took place at Blush Salon and Spa in Crystal Lake, which invites other people to donate hair in Kayli's honor. To do so, just say you're donating for Kayli.

To learn more about Kayli, visit trisomy18.blogspot.com/.

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