LIVING FOR TOMORROW GIRL'S COURAGE HELPS FAMILIES.Byline: Amy Raisin raisin, in botany and cooking raisin, dried fruit of certain varieties of grapevines bearing grapes with a high content of sugar and solid flesh. Although the fruit is sometimes artificially dehydrated, it is usually sun-dried. Staff Writer VALENCIA - At 16 - though often mistaken for 10 - Kristina de Bree is the grande dame grande dame n. pl. grandes dames also grand dames 1. A highly respected elderly or middle-aged woman. 2. of a recently formed trio living 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. , a genetic disease that, on average, claims the lives of half of its suffers by age 31. A junior at Valencia High, she knows what 2-year-old Micha Stephenson and 5-month-old Jacob Malchus will endure during their lives: countless doctor's appointments, rigorous medical treatments and a hypersensitivity hypersensitivity, heightened response in a body tissue to an antigen or foreign substance. The body normally responds to an antigen by producing specific antibodies against it. The antibodies impart immunity for any later exposure to that antigen. to germs. However, de Bree is calm and matter-of-fact about the only way of life she's ever known. ``I kind of look at it like God gave me my disease for a reason. I'm such a strong person because of it,'' she said. ``You just live your life, you know?'' All Santa Clarita Valley The Santa Clarita Valley is the valley of the Santa Clara River in Southern California. It stretches through Los Angeles County and Ventura County. Its main population center is the city of Santa Clarita. The valley was part of the 48,612-acre (19,672. residents, Kristina, Micha and Jacob will be at Valencia Meadows Park with their families Saturday for the Great Strides 10K walk to raise money for cystic fibrosis research. Cystic fibrosis sufferers - there are about 30,000 children and adults in the United States United States, officially United States of America, republic (2005 est. pop. 295,734,000), 3,539,227 sq mi (9,166,598 sq km), North America. The United States is the world's third largest country in population and the fourth largest country in area. - produce a sticky, abnormally thick 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. that collects in the lungs and often hinders pancreatic function, blocking essential enzymes necessary for healthy digestion. Micha, the first child born to Greg and Traci Stephenson, sat on the carpet playing with toy cars recently. The only hint of the disease was a sharp, phlegmy phlegm n. 1. Thick, sticky, stringy mucus secreted by the mucous membrane of the respiratory tract, as during a cold or other respiratory infection. 2. cough. ``He has a cold right now,'' Micha's mother said. ``Just when he's healthy we go to the hospital at least six times a year, for standard checkups. Micha's had a great first couple of years, but it's impossible to know what will happen in the next five years.'' Jim de Bree, Kristina's dad, said it's the buildup build·up also build-up n. 1. The act or process of amassing or increasing: a military buildup; a buildup of tension during the strike. 2. in the lungs that requires the most attention. ``The biggest problem is the lung concern,'' he said. ``You try to keep them healthy and away from colds. If you have that sticky mucus it can lead quickly to pneumonia.'' The de Brees learned their daughter had the disease when she was just 6 weeks old. Concerned about her ``failure to thrive Failure to Thrive Definition Failure to thrive (FTT) is used to describe a delay in a child's growth or development. It is usually applied to infants and children up to two years of age who do not gain or maintain weight as they should. ,'' the doctors determined it was cystic fibrosis. Kristina is still very small for her age. In fact, the recently licensed driver is still getting used to the perplexed and even frightened stares of other drivers when she's behind the wheel. It's all just part of the process, she said. Scott and Julie Malchus are still adjusting to Jacob's special needs, slowly mastering the machines and medicines that were absent with their 3-year-old daughter, who does not have cystic fibrosis. ``He really hates the chest percussion. He screams the whole time,'' Julie Malchus said of her infant. The apparatus, a staple for cystic fibrosis patients, pounds one's back to loosen the mucus in the lungs. ``I can't stand that,'' Kristina said. ``It's like someone's just banging on your back. It leaves all these red marks. I don't even do it as much as I'm supposed to.'' Malchus uses the percussor on Jacob twice a day, but she admits it hurts her to see him so upset. ``It's hard. When you have a child you have all these expectations,'' she said, her eyes welling with tears. ``You want them to live a long and healthy life.'' Little Jacob was diagnosed one month after his birth, chilling news that sent the couple into a maze of fear and confusion. The friendships they've made with the de Brees and the Stephensons, however, have made a difference. ``You quickly learn a lot of personal things about each other,'' Julie Malchus said. ``You can't help but feel a connection. They understand where you're coming from. We have a tremendous amount of family and friends who have been supportive, but it's not the same.'' While there is still no cure, recent advances in research have illuminated the genetic path to cystic fibrosis. For example, one of every 31 Americans - displaying no symptoms - carries the defective, recessive gene recessive gene n. A gene that is phenotypically expressed in the homozygous state but has its expression masked in the presence of a dominant gene. that causes the disease. Medical advancements have drastically prolonged life for cystic fibrosis patients over the last 40 to 50 years. ``When I was born they said I wouldn't live to be my age,'' Kristina said. ``And look at me, I'm in high school. I love music, I love singing, I play the piano. I want to go to college at UCLA UCLA University of California at Los Angeles UCLA University Center for Learning Assistance (Illinois State University) UCLA University of Carrollton, TX and Lower Addison, TX . ``I'm going beat this,'' she said, noting the statistic that half of the sufferers die by 31 is just that - a statistic. ``I didn't want to live my life in a bubble. I totally believe that God has a plan for me. I may not see it, but it's got to be pretty special.'' HOW TO HELP --What: Great Strides 10K walk to cure cystic fibrosis --When: Saturday, 10 a.m. Registration at 9 a.m. --Where: Valencia Meadows Park, 25671 Fedala Road --Who: 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 , Southern California Southern California, also colloquially known as SoCal, is the southern portion of the U.S. state of California. Centered on the cities of Los Angeles and San Diego, Southern California is home to nearly 24 million people and is the nation's second most populated region, chapter To participate in the walk or to make a donation, log on to www.cff.org or call (310) 479-8585 CAPTION(S): 4 photos, box Photo: (1 -- color) The families of cystic fibrosis sufferers, from left, Micha Stevenson, 2, Kristina de Bree, 16, and 5-month-old Jacob Malchus have developed a bond through their efforts to make lives better for the children. Eric Grigorian/Special to the Daily News (2) Kristina de Bree (3) Micha Stephenson (4) Jacob Malchus Eric Grigorian/Special to the Daily News Box: HOW TO HELP (see text) |
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