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Article 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

By Lenore T. Adkins

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.

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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