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Times-Advocate, 1988-05-25, Page 9Among first generation of CF sufferers to reach adulthood Times -Advocate, May 25, 1988 Page 9 Young woman's life disproves doctors' predictions By Yvonne Reynolds WOODHAM - Lisa Sutherland is a fighter. Shc is fighting for her life, and beating the odds. She is among the first generation of cys- tic fibrosis patients to reach adult- hood. The prognosis when her condition was diagnosed at 14 months was death before three. The Woodham resident will be 27 in September. Lisa, the daughter of Jim and Mary Lou Hyde of Hensall, was the subject of an article in the T -A in the summer of 1963, three months before her second birthday. In the article, • Lisa's mother said Lisa was one of the fortunate vic- tims of the disease: her problem had been diagnosed early, and CF had not yet gone to her lungs: Cycstic fibrosis is the most common life-threatening hcriditary disease of children. At present it is incurable. The disease affects the body's ex- ocrine glands, those secreting tears, sweat, saliva and mucus. The in- volvement of the respiratory and digestive systems can lead to seri- 4 nus complications. Thick, glue -like mucus in the lungs can make breathing difficult, and create an ideal environment for infections. Respiratory failure, .caused by repeated infections, may place a burden on the heart. The effects of progressive lung damage arc the major cause of death. In the digestive system the thick mucus blocks the flow of pancreat- ic enzymes necessary for normal digestion. Without the benefit of complete nutrients received from normal digestion, growth may be slowed. Cystic fibrosis occurs when a child inherits two genes for the condition, one from each parent. (It- is estimated .one in 20 persons in Canada carries the CF gene.) In these circumstances, each pregnan-. cy brings a 25 percent chance a child will be born with CF, a 50 percent chance the child will not have the condition but will be a carrier, anda•25 percent chance that the child will neither have CF nor be a carrier. • Some carriers don't know they AS A -CHILD- These pictures accompanied a story in a 1963 edition of the T -A on how Jim and Mary Lou Hyde coped -with the cystic fibrosis af- flicting their daughter Lisa. Above, Lisa contemplates a few of the dozens of pills she took daily to offset the problems caused by this glandular dis- order. Bottom, Lisa playfully sticks out her tongue as her parents admin- ister the "pulmonary housecleaning" which Lisa received during her grow- ing -up years for 35 minutes three times daily. Peter's Point Continued from page a suit to take the car to the garage?" "That isn't all we have to do," Elizabeth said. 'I have a hair appointment at 10:30, we have to do some shopping. and one of us will have to pick up Duncan. "I guess that'll be me, but why can't 1 wear what I'm wearing to " pick him up. What's wrong with wearing a track suit and running shoes?" "Because after that, we're invited to a luncheon at Green's Restaurant. Don't tell me you forgot that!" 1 didn't -tell her. I ran upstairs, slipped off my running shoes and flung my track suit on the bed. While I put on slacks, a sports jacket and tie, and my most comfortable brown shoes. I heard Elizabeth and Stephanie driving off. On myway into town, Duncan said: "Daddy, you know you can't afford to get another speeding ticket". I was tcn minutes late grtting Alexander to the pool: Whcn I got to the church, Elizabeth sighed: "Did yip have to wear that old jacket and those impossible shoes?" "We're only eating at Green's Restaurant. It's no big deal." "I told you that we're all going to an open house after Ave pick up Stephaniel' bm the farm; the Ryans are celebrating their Golden Wedding anniversary, and you look like an escaped prisoner. You might as well have worn your track suit." "What Ryans? I don't know any Ryans?" "1 told you yesterday .:." But 1 was thinking of what my,fricnd had said. "And did you remember to bring the overdue library books? And the camera?J..ike 1 asked you?" "People live longer in the country", he had said, "because they're so laid back". are, because they have no symp- toms. All children of CF adults will be carriers, as they'inheritat least one gene for CF. At present, no reliable prenatal test exists to. detect CF. Lisa's mother had never heard of the disease before hcr first child was born. The Hydes soon knew something was wrong with their baby, because she was always hun- gry, and had continual diarrhea. Mary Lou credits family physician Dr. John Goddard with suspecting the cause, and steering the Hydes to the right specialists for diagnosis.' Then began the routine faced by every parent of a CF child. Lisa slept under a mist tent every night, breathing in antibiotics forced. into the air by a pump. Every morning the bed had to be stripped, and the wet soggy sheets and blankets ex- changed for dry ones. - The machinery was so noisy Jim Hyde moved the pump to the base- ment, and ran the pipes up the wall to Lisa's room. If the power failed, the family was awake instantly. Their home was at the top of the hydro crew's list to have electricity restored as quickly as possible. The mist tent went everywhere with the family - any overnight - stay; and trips to Florida where the Hydes hoped the warm climate would benefit their daughter. It was set up in motels and hotels. "We would_stop and explain, and everyone was very cooperative. We 'always asked for the end room in a motel because of :the pump", Mary Lou recalled. Every day for 35 minutes before each meal, the child lay head down on either her mother's or father's crossed legs while one of them vig- orously clapped with cupped hands various areas of her chest front and back. This loosens the mucus in the lungs so it can be spit up. Lisa's sister Jacquie, three years younger, got into the act as soon as she could. The toddler would cup her little hands and pummel her sis- ter's chest, or sit by her head and read her stories during therapy ses- sions. CF people must take dozens of the cotazym pills necessary for di- gestion every tit'ne they eat. Food is heavily salted, and extra salt pills are swallowed regularly. They also require antibiotics and extra vita- mins, especially Vitamin E. While growing up, Lisa scooped up her medication by the handful from of a cereal bowl beside her plate. She now_ takes fewer, but stronger, pills. Drugs were a big expenses, amounting to up to 5200 a month in 1960s dollars for some families. Hours after going to bed on the The Hydes bought cotazym in eve of her sister's entry into the batches of 1,000. The mist tent teens, Jackie crcpt back down .tho was an additonal $250. As of Scp- stairs to talk to her mother. Shc tember 1986 the provincial assistive wanted to know why Lisa had given devices program was expanded to her all her possessions - her clothes, cover 75 percent of the costs of res- her dolls, her furniture, her bike - piratory equipment for all ages. everything. When Lisa was young, financial But once again Lisa proved the TWO PRECIOUS LIVES - Lisa Sutherland, who has cystic fibrosis, has beaten the odds. She has survived to become a mother, and proudly holds her daughter, four -month-old Shea. - assistance was :available from the Crippled Children's Society with a means test. Mary Lou objected to this, reasoning that "a means test is not right for any life and death dis- ease; living with the constan(finan- cial and mental strain is a drain no matter what one's lifestyle". - . Doctors originally predicted Lisa would not live past three. When she passed that milestone, the limit was. upped to age seven. - That too passed. The next promise was eliminating the mist tent if Lisa graduated from public school. - She did. Her probable lifespan was raised to age 13. prognosticators wrong. She lived through the night and did celebrate her thirteenth birthday. Shc sur- vived her teens, and is more than halfway -through her twenties. . "Lisa is very strong-willed. She refuses to give in. Shc is defer - Mined to live, whatever happens", her mothcr said proudly. Lisa confirms that she has al: lowed nothing to hold her back. She graduated from highschool, where she met Peter Sutherland, her future husband, continued on through Westervelt Business -School, and worked in London as an executive secretary until a year ago. She is now a bookkeeper at Hyde Brothers Farm Equipment Ltd. in Hensall. Peter had a talk with Lisa's par- ents when the couple began think- ing about marriage. The fact Lisa had CF didn't fazc him. Thcy have been man and wife for seven years. Lisa doesn't need her chest therapy as often as in childhood, but her husband is ever on the alert for signs it's time to get out the electric percussor again. (This modern ap- pliance has replaced most of the for- mer manual exertion.) ' "Pete gets a big thrill out of thumping me", Lisa laughed mis- c hieveously, adding she expects her husband will notice she is getting "a little congested and will insist on a therapy session. . Lisa, like other adults with CF, always sounds as though she has a cold. Her major concern is dAturb- ing those around her in church or other public gatherings by her con- stant cough.. ' - Lisa has had two close calls with the ever-present shadow of death. She was hospitalized in 1984 when her right lung collapsed, and again in 1986 when her left lung did the same: Her determination to live brought her through both crises. Lisa and Pete had another decision to make recently. Should they have a child? After weighing all the pros and cons, they decided to go ahead. Lisa became a mother four months ago, at the end of a completely nor- mal pregnancy without even morn- ing sickness, and an equally normal delivery. Daughter Shea does not have CF, though she is a carrier. "Shea is a micracle child. .1 was not supposed to live long enough to become a !mother. I've never been in a bad mood since she was -born", Lisa exulted, giving her de -ply loved baby an extra hug. People with CF, and . those who love them, do no take life -for grant- ed. For Lisa every day is precious, .whether it be slated for spring clean- ing, a day at a shopping mall, or doing the laundry. She confesses she is still trying to figure out why she has CF. - "At one time I did say 'Why me God?' but that was asking for my parents' sake: I realize now all they went through and gave up for me." "Having a child- with' cycstjic -fib- rosis teaches you to overlook the trivial things. Life is most impor- tant, and seeing Lisa live and give life to another means mpre than anything else", Lisa's mother. con- fided Looking at, their daughter, and their new little grand -daughter, Mary Lou -and Jim Hydc agree that "it was worth all the hard work". Kippen hosts Huron South District WI annual By Dolores Shapton FIENSALL - Busting Balloons represented the celebration and was the start of a, new beginning as each day and cach ycar is an opportunity to grow and make our organization stronger, more alive' and active in the purpose we stand for. Huron South District Women's Institute District Annual was hosted by Kip - pen East Women's Institute and a cordial welcome was given by Mar- garet Hoggarth. President Helen MacKenzie, Seaforth, challenged each person to take home one n—v thing with them and adopt it n their Institute. In Memoriam was conducted by Crcditon with Irene Haugh and Lois Hodgins remembering the departed ones' friendship, help, thoughtful- ness, joy and sharing our hearts with them with their short stay on carth. Reduce, Reuse, Recycle, Recover, arc the 4 Rs of Waste Management. Each was explained by one of the five ladies who had attended a recent conference in Kingston. June Ste- wart was the delegate from the dis- trict. Program co-ordinator June Ste- wart and Curator Dolores Shapton shared thoughts on "Celebration - A New Beginning" adopted as their re- ports for the ycar under 1st vice president Marion Dougall who an- nounced the curator's workshop will be held August 9 at Dashwood Community Centre. Shc urged members to have house logs ready.. Pennies for Friendship were ex- plained by Joan Smith, Zurich fol- lowed by the contribution of cach Women's Institute in the district. Entertainment was enjoyed with Martha Weigand reading The Light- er Side of Weight -watching, Shirley Cooper expressed thoughts on the Fanners Wife and Olga Hcrn about the bricklayer who lost his presence of mind. Betty Beutenmillcr, Scaforth, spoke on a recent trip to Austria whcrc their daughter Lisa is present- ly a nanny. She told us about the beautiful country, their concern for acid rain and that people can be con- ditioned to sort their garbage just as we are beginning to talk about do- ing the same. The stores all close at 12:00 noon on Saturday and that is a known fact. Lisa is presently car- ing for her third family. She is now fluent in German and learning French, and has signed to stay for another year. Provincial Board member Marian Dougall said "Women's Institute, wc arc here, we arc changing, wc have a great tradition ahead of us and it has some real benefits." Shc brought us up to date on changes in our handbooks; there will he a W.I. booth at the Royal. Agricultural Winter Fair from November 9-20. She told us that 32 resolutions had . been broughtto the recent board meeting and 19 were passed. We. were to take immediate action on three: recycling, help for the hard of hearing, and the prohibiting of war toys. On Junc 1, Dorothy Fur -her will be inducted into the Hall ' Fame at Milton. She remindct that we should wear our badge, that the po- sition of FWIO Resolution and Tweedsmuir History Curator arc open. Past president Shirley Cooper presented Marian with a remem- brance for hcr dedication to W.I. Work during her three years as Board Member. Guests included Margaret Taylor, Huron West, Doris Spence, Perth South,Huron East and Leone Focrt- er who brought greetings. Jane Mucggc, Rural Organization Spe- cialist, informed us on on the hap- penings in the county and congratu- lated Dolores Shapton on the recent announcement that she will be re- ceiving a Centennial Award. Lon- don Arca President Irene Richard- son, St. Marys, brought greetings and involved everyone in a six - minute workshop on Meeting the media. She reminded us that in In- stitute work our cup is always half full rather than half empty. Helen MacKenzie announced that Susan Stewart, Dublin, sponsored by Scaforth won a prize for the es- say contest and will be announced at the Newfoundland Conference. An unanimous vote favored a one - day convention for London arca rather than the present one and half days. London Arca Conference is October 13-14. Presidents remarks concluded the well organized meet- ing that we should start to make a new beginning with enthusiasm. The 1988-89 officers are: Past president Shirley Cooper, RRz, Ex- eter; President Helen MacKenzie, Seatbnh; 1st Vice-president Marian Dougall: 2nd Vice-president Lois Hodgins, RR 2 Crediton: Secretan-- treasurer Sarah Elliott, Seaforth: Assistant secretary Marilyn Pym,• RR 3 Exeter. Public relations: Given Coward. RR! Woodham: Auditors Kay Hay, Zurich and \lildred Klopp, Luric h: Fall rally delegate Jcan Lynn. RR l \Vox dhant: Alternate \lawm Porter, Exeter; London arta dc1: gat: s 1 le len \1acKcniic and \larian Dougall. al- ternate arc,i delegates Saratiklliott and \laril�n Pym: program coordi- nator June Stew .art: rc olutions Aiona curator Dolores Shapton. Ibook cotnnutte: is Dolores Shap - ton, 11: I; n \lacK; n; ic. Shirley \t,u‘ •R.t.tet. Olnc flicks and 11 ilJa 1a‘ ate. •1'()1:()N I O four .ti ely issues cant; up tot .tisc ussion at the Feder- ated \\ Ont; n's Institute of Ontarii?) semi-annual Board \kecting, A policy statement was issued stating that FWIO supported the availability of rural childcare. It was the Women's Institute in 1984 who • initiated and developed the pilot project for rural day care. This year, the Bethesda Reach Women's Insti- tute has established a rural childcare program in their arca. Subject to the availability of funds the Bethes- da Reach Women's Institute and • their care giver will write the manu- al on rural childcare. This will be available to anyone interested in ru- ral childcare. The second topic under discussion was bird seed. When samples of bird seed were analyzed it was found that they contained a number of weed seeds causing weeds to be in • - troduced to areas whcrc they had not been before. • A resolution was .passed urging that birdseed compa- nies package birdseed without any %%eed seeds. With taxation on their minds as - wcll as concern with the plight of many farmers, an emergency.resolu- tion was passed urging the federal govcrnment.to bring the assets of a farm as well as farm land into the S500,000 capital gains deductible at the time of a farm sale. The .theme of FWIO from April 1988 -April 1989 is Waste Manage- ment-Recyling was evident in many of the deliberations of the FWIO Board. TheConfcrencc in Kingston May 13-15 sponsored by FWIO on Waste Management has created a great deal of enthusiasm throughout rural Ontario. Displays on recycled articles were on hand - for all the Board Mcrnhcrs to sec. Waste- managemertt - Recycling will be the theme of the FWIO Booth at the Royal Winter Fair this ycar. ANNUAL MEETING - The Kippen East Women's Institute hosted the 85th annual Huron South District meeting at Hensall Public School last Thursday. From front left are the new 1988-89 executive: Dolores Shapton, curator, Marian Dougall, vice-president, Helen MacKenzie, president, Sarah Elliott, secretary -treasurer, Shirley Cooper (back left), past president, Marilyn Pym, assistant secretary, Lois Hodgins, second v -p. f • 1