Breath of Hope: Southold girl battling cystic fibrosis

SOUTHOLD - On the outside, Camryn Koke looks like any happy 7-year-old girl. One of her favorite things to do is to play with her younger siblings. But on the inside, Camryn is not like most little girls at all. She's one of about 30,000 people in the U.S. battling cystic fibrosis, a disease of the body's mucus-secreting glands. That mucus quickly becomes infected, causing chronic illness and other health problems.Camryn does an hour of chest therapy each day in her Southold home. She takes up to 50 pills daily just so she can digest her food, and uses a vest, a nebulizer and more. Doctors say the average life expectancy of someone with the disease is age 37. There currently is no cure, and people who suffer from it typically succumb to chronic pneumonia. But people with cystic fibrosis are not without hope. This past January, the Food and Drug Administration approved Kalydeco, the first-ever medication that targets the root cause of the disease. Currently, the drug only helps about 4 percent of patients with cystic fibrosis.Camryn says it's an important to find a real cure because it would make her mom happy, and also so that she can be like everybody else.The Cystic Fibrosis Foundation is holding a Great Strides walk in Westhampton on May 19 starting at 9 a.m. on the Village Green. For more information, check out the Cystic Fibrosis Foundation.

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