April 29, 2010

Fundraising walk to benefit Cystic Fibrosis Foundation

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Three-year-old Tori Church was diagnosed with cystic fibrosis late last year. (photo by Joe Howell)

Fundraising walk to benefit Cystic Fibrosis Foundation

With her delicate features, curly blonde hair and big hazel eyes, Tori Church looks like a pint-sized version of the Disney princesses she adores. Her healthy appearance and the boundless energy typical of 3-year-olds like herself offer no clues that she is living with a serious illness.

Tori is one of 30,000 children and adults in the United States who have cystic fibrosis (CF), a life-threatening genetic disease that causes mucus to build up and clog some of the organs in the body, particularly the lungs and pancreas.

She has been receiving care at the Monroe Carell Jr. Children's Hospital at Vanderbilt since she was diagnosed last December.

Tori’s pediatrician, Frank Haraf, M.D., referred the Churches to Children’s Hospital after Tori began having unusual bowel movements. A sweat test confirmed that Tori had CF, and she began to be cared for by Elizabeth Perkett, M.D., professor of Pediatrics in the Division of Pediatric Allergy, Immunology, and Pulmonary Medicine.

“We were shocked,” said Natalie Church, Tori’s mother. “The only thing I knew about CF was that I knew a girl who had lost her life from it a few years ago.”

Tori began a rigorous treatment schedule at home, including three daily breathing treatments and a therapy called chest percussions that her mother performs on her twice a day. She also takes 15 pills and uses an inhaler twice a day.

“Her treatments go by pretty fast,” Church said. “She is doing so well now that she can swallow all her pills without even drinking anything. She’s been really great about it.”

Tori is physically able to do anything she wants. Her favorite activities are playing outside, swimming and playing with her friends and her year-old brother, and, of course, all things Disney. She and her family have been to Disney World several times.

Since Tori’s diagnosis, the Churches have been trying to learn as much about CF as they could and have become involved with the local chapter of the Cystic Fibrosis Foundation.

“We are doing what we can to help out and promote awareness,” Church said. “We’re all trying to learn about it. I can’t just sit here. I feel like I need to be doing something.”

To join Vanderbilt’s team for the upcoming Cystic Fibrosis Foundation’s Great Strides Walk on May 15 at the Nashville Zoo, click here.