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HomeMy WebLinkAboutClinton News-Record, 1970-11-05, Page 9Treatment of Cystic Fibrosis children requires expensive equipment in the home and steady consumption of medicines. Here Mrs, Gerald Nadon helps Denise, the first of her children who were found to have CF, as she spends some time in mist tent. YoUng Michael John and bate have to be pummeled while they rest With their heads down for long periods each day to the sticky rhutut in their kings Will be loosened. The children becoine sb used to the pounding that they sometinies fall asleep to the rhythm of their parents hands. Through the viewfinder Silk `n seeds Pines in the sunset SECOND sgpTIQN 105th YEAR Somehow, you just never seem to realize how Minns a problem can be until it hits close to home. That's the way things were for Mrs. R.. A. Simons of Bayfield. The name cystic fibrosis had been just that to her, a name. Then a little over a year ago it was discovered that the three children of her niece, Mrs. Gerald Nation of Windsor, all suffered from OF. ' Jan Simons then began investigating the situation. She discovered that CF is a major cause of death among children, that it strikes one in every 1000 children, that it claims more victims than polio ever did even in its Worst Pre-vaeeine In Cystic fibrosis certain glands do not function properly: the mucus glands secrete an abnormal thick, gluey mucus and the sweat glands produce an unusually salty sweat. The sticky mucus is responsible for the principal complications. The abnormal mucus causes trouble by clogging the bronchial tubes in the lungs and in the digestive system by preventing the flow of digestive juices into the small intestine. The child is prey to bronchitis, pneumonia and other lung infections; the lungs themselves may suffer progressive, permanent damage. Because digestion is impeded, severe _malnutrition may occur. Some CF babies at birth have a blocked small intestine requiring lifesaving surgery, Con non symptons include frequent cough, rapid breathing and sometimes wheezing; also bulky diarrhea, failure of a baby to gain weight, despite an excellent appetite, sweat which is salty to the taste and "Pot Belly". The child may appear to have asthma, bronchitis, celiac disease or an allergy. CF often presents symptom which are confusing. As recently as 10 years ago BY DICK SPICER Mr. and Mrs. Gerald Nadon call their unpretentious home of Windsor, "our little hospital." It's earned that name. Without the two rooms jammed with special medical equipment, the three Nadon children might die. , The youngsters, aged from 16 months to six years have cystic fibrosis, a child killer that strikes about one out of 1,000. The tots must struggle daily for breath, have problems digesting, are easy victims of colds and pneumonia. They need large daily doses of physiotherapy, drugs and love. Medical care takes about four hours each day. By outward appearance the Nadon children, like other young CF victims of at least 15 STORY AND PHOTOS FROM THE WINDSOR STAFF most CF children died but today, early diagnosis and expert treatment means many affected yonngsters stand a good chance of living beyond their teens. It is an ,inherited disease, usually occurring when two parents carrying the gene that causes the disease have children. They may have no symtoms themselves but the combination of the two genes means there is one chance in four that they will have a CF child, two in four that their children will be carriers of the disease without being effected, and one in four that they will evade CF altogether. These sobering facts started families in Windsor, are normal kids. But the hospital home isn't. In a downstairs closet at stored more than $600 in pills. The children use more than 4,000 a month, the supply can be gone in six weeks. Upstairs, oxygen-like tents hang limply over two cribs and a bed. A hospital bed is jammed into one corner, a "work bench" on which the Nadon children must have their backs and sides pummelled twice daily to free the congestion in their lungs. At night. the children sleep in their own little worlds of plastic tents billowing with fog. Compressors hum quietly into the night, pumping thick medicated mist around the sleeping tots. Sometimes the muffled coughing never seems to stop. In the morning, the children wake soaked. Their day begins shortly after 6:30 a.m., with the back and side pummelling and then drugs. At least 15 with each meal, eventually it may be 40 a meal. When the treatment session is over, the oldest, Denise, goes off to regular public school — like any other six-year-old. Back at home, the tents are scrubbed to eliminate possible infection. Cystic fibrosis is an inherited disease, not contagious, so there's no worry .about other children catching it. It is a glandular disorder. Abnormally thick mucus will plug the lungs, and digestive system, blocking air passages and making it difficult to digest food. There are enzymes missing in the pancreas and the sweat glands don't function properly, especially a problem in Windsor's muggy summers. If it were not for the pills before each meal, the child Mrs. *MP thinking. Since her husband had retired from the air force, she was no longer working, one of her three children was married and the others in high school, she felt She had time to do something about the situation, So she started a PerSenal campaign to make others aware of the situation and to help raise money for the Cystic Fibrosis Foundation to try to find the actual cause and a control or cure of the _disease, The story of her niece's family, reprinted with the permission of the Windsor Star wilt help explain her concern. would suffer malnutrition from the inability to digest. Because of the congested lungs even ordinary colds read to dangerous complications. So at times the child takes antibiotics wholesale to fight off infection. Minor ailments might need hospitalization. CF has confusing symptoms. Often it is mistaken for whooping cough or asthma. If the child, gets pneumonia, it might not be immediately traced back to CF. ' That happened to the Nadons. Little Denise tested negative when she was 18 months old. But all the children continued to be very susceptible to colds that dragged on for months. They needed antibiotics, vaporizers and croup tents. The doctors thought they had only an unusual diet problem. "I used to wonder how other mothers got all their sleep. I used to get only three or four hours a night," said Mrs. Nadon., About a year ago all three. youngsters came down with colds that hung on from September to December. Hospital tests were ordered and Denise was re-tested, this time with new equipment that was more sensitive. The reading was positive. Both boys were tested. The reading was the same. No other family in Windsor has three CF victims. The children went to London for examinations by CF specialists there. Their mother roomed across the street from the hospital while the children were introduced to the treatment that will last the rest of their short lives. Twice a day the kids breath from masks of medicated air. They lie on the hospital beds, their feet up, head down, while parents or a nurse from the Victorian Order thumps their back and sides to release the congestion. "I don't know -how they can stand it," said Gerald Nadon, who works with Burroughs Business Machines. "We tried it on ourselves and it hurts." But the children are used to it. Som'etimes they fall asleep to the rhythmic body clapping. Occasionally the nurse claps them in time to music, a game for the kids. Not long ago little was known about CF. The chances of a child surviving beyond five years was slim. But now there's' better treatment although no cure. The Nadon boys are responding. They are stretching up inches, putting on pounds, Denise who missed four months of kindergarten has begun Grade one with little trouble. "The doctor says with the way they're responding to treatment there's no reason why we can't expect the best," said Mrs. Nadon. "With the present medicine and techniques they can expect to live into their early 20s. But by the time they get into adulthood, who knows What medicine might have developed by then." "That's all we're hoping for," said Mk. Nadon, Cystic Fibrosis treatment is costly in terms of time and money. A small army of volunteers hop the NadonS and similar families in the city, ' "Without financial assistance front the government and various service dubs, We could not even attempt to care for the children," says Mrs. Naden. "There are a great Many wonderful, kind arid helpful people in the World." .I, Clinton .CLINTON,, ONTARIO THV1350.AY, NOVEMBER 5, 1970 num- Tragedy .in. family Local 'woman crusades against Cystic ..fibrosis Their home became a' hospital when CF struck „,„„„„,„,„„„„„„„,„,„„„,„,„„„„„,,„„ ',"%":',1!:".!. •