4-year-old boy fights battle against cystic fibrosis

first_img AD Quality Auto 360p 720p 1080p Top articles1/5READ MOREBasketball roundup: Sierra Canyon, Birmingham set to face off in tournament quarterfinalsTwo of those things are a routine the family calls “Nebby-Vest,” two 20-minute periods every day during which Johnny inhales medicine from a nebulizer and dons a vest that dislodges the mucus clinging to his lungs. His brother, Christopher, 11, and sister Emily, 8, keep a watchful eye during the procedures. “We just make sure he keeps the tube in his mouth and that the tubes on the vest stay connected,” Christopher said. “He gets to pick the TV show during those times,” added Alison. A defective gene in the bodies of cystic fibrosis patients causes the body to produce abnormally thick, sticky mucus that clogs the lungs and leads to life-threatening infections. Johnny was diagnosed with CF when he was 8 months old. He was not gaining weight or thriving at normal levels for his age and was having digestive problems, one of the red flags of the disease. “It was on Mother’s Day weekend four years ago that we found out,” Alison recalled. “I had a friend who died of it when she was 21, so I knew it wasn’t something that would be cured with a two-week course of antibiotics.” According to the Cystic Fibrosis Foundation, the median age for survival – now 36.8 – has been increasing steadily over the last five years, thanks to new treatments and therapies. The Buchanans moved to Castaic 21/2 years ago from Hawaii, partially to get better treatment for Johnny. “In Hawaii, there were eight to 10 kids who had CF,” Alison said. “Our doctor at Childrens Hospital has at least 30 here.” Alison and husband Mike are both ministers with the college-based Athletes in Action and credit their faith with helping them cope with Johnny’s condition. “We don’t see it as a negative,” she said. “What it has done is brought us closer together. We trust God is in control and will give us the strength to deal with this.” Strength has come from one of two local churches, which have helped the couple pay more than $100,000 in medical expenses not covered by their health insurance. Alison also draws from the common experience of parents in a CF network set up at Childrens Hospital Los Angeles. She talks frequently with another CF mother who lives in Santa Clarita and says it helps immensely. “It’s so nice not to have to explain what you’re going through. They already know,” she said. “The people in the network have helped so much with insurance and the social workers at the hospital. It’s great.” [email protected] (661)257-5252 IF YOU GO: The Great Strides Walk to raise money for cystic fibrosis research is scheduled for 9:30 a.m. Saturday at Westfield Valencia Town Center. Registration begins at 8:30 a.m. For information, see www.cff.org/great-strides. To make a donation, mail a check payable to the Cystic Fibrosis Foundation, 6420 Wilshire Blvd., First Floor, Los Angeles, CA 90048. Note on the check that the donation is for the Valencia walk.160Want local news?Sign up for the Localist and stay informed Something went wrong. Please try again.subscribeCongratulations! You’re all set! Johnny Buchanan, a tow-headed 4-year-old who bounces rather than walks, displays boundless energy that belies the traditional image of a youngster with cystic fibrosis. “Overall, he’s doing pretty well,” says Johnny’s mother, Alison, who takes him to Castaic Community Preschool in the mornings. “Of course, that’s from what we see on the outside. We can’t see what’s going on inside. “He’s started talking about his CF with the teachers and other students,” she said. “Attitude is everything. His teachers are supportive and he’s comfortable with the things he has to do.” last_img read more