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FAMILY RELIES ON FAITH 4-YEAR-OLD BOY FIGHTS BATTLE AGAINST CYSTIC FIBROSIS.


Byline: CAROL ROCK Staff Writer

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 cystic fibrosis (sĭs`tĭk fībrō`sĭs), inherited disorder of the exocrine glands (see gland), affecting children and young people; median survival is 25 years in females and 30 years in males. .

``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 What's Going On is a record by American soul singer Marvin Gaye. Released on May 21, 1971 (see 1971 in music), What's Going On reflected the beginning of a new trend in soul music.  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.''

Two 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 nebulizer /neb·u·liz·er/ (neb´u-li?zer) atomizer; a device for throwing a spray.

neb·u·liz·er
n.
 and dons a vest that dislodges the mucus mucus /mu·cus/ (mu´kus) the free slime of the mucous membranes, composed of secretion of the glands, various salts, desquamated cells, and leukocytes.

mu·cus
n.
 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 according to
prep.
1. As stated or indicated by; on the authority of: according to historians.

2. In keeping with: according to instructions.

3.
 the Cystic Fibrosis Foundation The Cystic Fibrosis Foundation (CFF) is a non-profit organization in the United States established to provide the means to cure and control cystic fibrosis. The Foundation provides information about cystic fibrosis (CF) and finances CF research that aims to improve the , 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 2 1/2 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 Athletes in Action (AIA) is an evangelical Christian sports ministry. Athletes in Action, a ministry of Campus Crusade for Christ, works with athletes and coaches to use the unique platform of sport to help people around the world with questions of faith.  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 not covered Health care adjective Referring to a procedure, test or other health service to which a policy holder or insurance beneficiary is not entitled under the terms of the policy or payment system–eg, Medicare. Cf 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 Los Angeles (lôs ăn`jələs, lŏs, ăn`jəlēz'), city (1990 pop. 3,485,398), seat of Los Angeles co., S Calif.; inc. 1850. . She talks frequently with another CF mother who lives in Santa Clarita Santa Clarita, city (1990 pop. 110,642), Los Angeles co., S Calif., suburb 30 mi (48 km) NW of downtown Los Angeles, on the Santa Clara River; inc. 1987. Situated in the Santa Clara valley and nearby canyons, Santa Clarita includes the former towns of Canyon Country,  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.''

carol.rock(at)dailynews.com

(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 Westfield Valencia Town Center, formerly Valencia Town Center, is a shopping mall in Valencia, California, owned by The Westfield Group. Its anchor stores are JCPenney, Macy's, and Sears. The Robinsons-May was renamed Macy's on September 9, 2006. . 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.

CAPTION(S):

photo, box

Photo:

(color) Johnny Buchanan, 4, who has cystic fibrosis, his mother Alison and the rest of his family will participate in the cystic fibrosis walk Saturday.

David Crane/Staff Photographer

Box:

IF YOU GO (see text)
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Publication:Daily News (Los Angeles, CA)
Date:May 12, 2006
Words:642
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