Winnipeg Free Press

Winnipeg Free Press (Newspaper) - May 12, 1985, Winnipeg, Manitoba Winnipeg free press May 1985 sunday no cure for Sarah at one time she needed 14 tablets with each meal just to stay alive Sarah haves died in 1984 after a 10year Battle against cystic this written by her Mother for the the sunday describes the daily life of a of child and offers a moving tribute to the courage of Sarah and to All the other Young sufferers of this crippling i am usually Woken by the sound of Sarah coughing the sound pinches my insides and makes me hold my i leap out of bed and go to offering what Comfort i i put my arms round not too muzzle her head and pour out All the Sloppy endearments that i can think Sarah is40 years old and has cystic As soon As she has enough breath after one of these nocturnal coughing fits we began Sarah has to lie in different mainly sloping while i tap her this dislodge the often infected mucus which Sarah can then cough Ive developed a Good technique which makes us feel More we also use some yoga postures they Are excellent for exercising the a quiet cuddle follows the by this time Geoff is awake and Sarah climbs into bed with him while i make Geoff keeps late hours he plays guitar and sings in a at Odd times throughout the Day he will pick up his guitar and serenade silly words Are put to songs and there is jots of it is their time together breakfast is an important meal while drinking our Early morning Tea we decide what to for Sarah it usually runs to three courses mushrooms on Toast and fruit juice and and tablets Iron and pancreatic it seems that in the cystic fibrosis of the pancreas makes the necessary digestive enzymes but they sort of get stuck in the so the food is not properly hence the need for from the age of about 15 months Sarah has been Able to Swallow at one time she needed 14 tablets with each when she went to a birthday party she would take a Tupperware Container with a total of 18 tablets in the other children adults too would watch amazed As she effortlessly downed one Little of Friend would go one taking All her tablets in one now with new brands the tablets Are reduced to we Are always hoping for improvements in the treatment of the and in 10 years there have been quite a few encouraging once we Are organized and the breakfast dishes Are cleared we do the Nebulizer a tedious Sarah wears a mask attached to tubing connected to a the antibiotics Are pumped out As a Fine which Sarah the machine is Cumberson and and the the of facts on a Good Sarah will be Able to walk the 50 Yards or so to the Sweet a major leads Trail across the there is also an exhaust pipe which must go out of the window and our Given half a will sit and inhale the drugs of these wildly expensive after 20 minutes the first Antibiotic will have run through and the equipment then needs to be washed and dried ready for the second on everything has to be cleaned and dried ready for the evening by medications should have but they have each Day sarahs temperature rises to and at about this time she begins to feel very the thermometer confirms what we already so its a paracetamol Tablet and Back to Sarah snuggles under the Duvet and i read to she Falls asleep and it is quite Likely that i will on sarahs Cheeks will be Bright her hair will be plastered Down with sweat and she will throw Back the covers and say in physiotherapy which takes in All about three hours a Day is followed by then we try to go out for an the weather dictates our movements Damp and cold Are so we stay no matter How warmly Sarah is she cannot retain her body normally we drive to the shops and i Park As near to them As possible so that there is Little walking we take our time in the supermarket and Chat to people whether we know them or we both miss i was teaching until this time last when sarahs health took a sudden downward she Hast been Back to school since on a Good Sarah will be Able to walk the 50 Yards or so to the Sweet shop on her own i hover round trying not to be too anxious or Sarah views those expeditions As an exercise in mental arithmetic she spends the Money i give her to the last Home we go to Complete another physio to 4 when some friends might either from my school or i then Busy myself in the Kitchen making pots of Tea and organizing the evening no fast foods for she likes proper dinners with lots of fresh vegetables and then a in better organized than i used to be and always try to make double quantities to put something in the Freezer for Days that Are after we talk or play Sarah used to enjoy childrens but recently she has become More meditative and finds the frenzy and activity on to too we also have a great Deal to talk Sarah is interested in current and most of All in people and she also likes to read and make things with we never miss Hospital believing that each one makes Sarah a tiny bit the most disorganized Days Are when we have an outpatient this takes we drive d cystic fibrosis results from an inherited Gene that causes abnormally adherent secretions from the mucous this affects the sufferers lungs and digestion and requires careful Dally manage there is no cure and research impeded because of does not affect Ani n in there were of suf feres in about one in every Canadian children is born with the Dis d one person in 20 is a symptomless Carrier of the child of two such carriers has a 1 in4 Chance of contracting the disease and 400 children Are born with of every year in the number of sufferers in Britain is now to d Twenty years ago Only 12 per cent of of children reached but be cause of improved treatment that figure is now 75 per to the Brompton Hospital in a journey of 45 minutes if were Public transport is out we cannot risk being late or meeting germs or the draughts As the doors Are open and As people tend to give me hostile looks because sarahs cough sounds so sometimes we have waited for hours to Fie anxious time because what he says is so any change in the sound of sarahs Chest and she could be in for a course of treatment that has lasted up to five in the evening there is More followed by More Nebulizer then once in bed even More the idea is to try to leave sarahs Chest As Clear As possible so that she will have a Good Sarah reads for awhile if Geoff is he is summoned to give her a i hear them chatting for then it goes very much later Geoff reappears after having fallen As Early As am ready for i get As much sleep As possible i seem to be permanently before falling i enjoy the knowledge that Sarah is at Home Safe in her own i also Tell myself that she is a Little better and mentally i charge my build up some Energy for the next from Sarah i have Learnt the Power of positive Sarah will Wake at some Point during the having slept through several coughing we do some make a drink of Honey and find extra try sipping cold do some yoga read stories and finally have Tea and Many the time Geoff has returned crept Down the Garden path and Slid the key into the 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