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HomeMy WebLinkAboutThe Citizen, 2002-05-08, Page 11uiet time with Mom Daniel Fritz, left and his little brother Darian listen as Mom, Lisa, reads a farm story. Though Daniel loves to make trips out to the barn to see the animals, CF makes it impossible for him to stay there for any length of time. (Bonnie Gropp photo) CPR station In 1907 the Canadian Pacific Railway was built through Blyth, connecting the port of Goderich to Guelph. This picture shows the station (on what is now the Greenway Trail) as it looked about 1910. The station was moved in the 1980s to The Old Mill south of Blyth where it remains. The tracks were pulled up in 1988. Watch for a complete history in The Citizen's 125th anniversary edition. — Photo courtesy of Janis Vodden. Be Part of History The Citizen will publish a special commemorative issue for the celebration of Blyth's 125th anniversary August 2-4. Make sure you're part of this me.-norable issue to be published July 31. Call toduy to reserve advertising to tell the story of your business or your family. The Citizen Phone: 519-523-4b92 Fax: 519-523-9140 Email: norhuron@scsinternet.com THE CITIZEN, WEDNESDAY, MAY 8, 2002. PAGE 11. For child with CF good days can turn bad fast By Bonnie Gropp Citizen editor Daniel Fritz is a handsome little fellow, tow-headed, with sparkling blue eyes and a shy smile that could warm Jack Frost. Yet, ask the two- year-old what's special about him and his response could break your heart. "My lungs." The Brussels-area child is one of 3,000 Canadians who suffer from Cystic Fibrosis, an incurable inherited disorder that affects the lungs and digestive- system. Though advances in research and clinical care have increased the survival rate; some live into their 30s; those with CF face foreshortened lives because of lung disease. Daniel's story began two winters ago. His morn, Lisa, said that while the youngster had none of the normal symptoms of CF, such as failure, to gain weight, bouts of pneumonia and low energy, she and her husband Tim, began to wonder if the child was allergic to milk. "Every time we would put him on milk, he would get diarrhea," she explains. She mentioned this possibility during a visit to the doctor. "That day his lungs were fine, everything was fine. There was nothing to indicate any infection." The next day, Daniel had developed "an awful, awful cough," she says. However, as little ones are often coming down with colds, Daniel's parents weren't too concerned. Even the next day when he spent much of his time sleeping, the alarms really didn't go off. "Babies do sleep a lot and there was no fever." By the first part of the week, however, Daniel was very listless and an appointment was made for Tuesday with a pediatrician. "She said he was dehydrated and needed to go to the hospital," says Lisa. While there Daniel was treated first for asthma, then x-rays were taken to see if he had somehow swallowed something that was affecting his breathing. On the Thursday, doctors did a CF sweat test. With this a small area of the skip is stimulated with local heat or medication. If the sweat contains more salt than normal it supports a diagnosis of CF. Daniel's test came back high so it was repeated. The results were the same. Though Lisa's reaction was typical, wondering why it had to happen to their little boy, she said she accepted it fairly well. "I cried a lot, don't get me wrong. The one thing that really made me angry was thinking of all the parents out there who have children, healthy children and don't care for them. But the doctor reminded me that they would never look after Daniel, that he needed us. That got me over it." Once acknowledged, if not actually accepted, the Fritzes needed to understand what they were fighting. "Stratford hospital was really good in helping us understand what we would have to deal with, all his therapies and all that needed to be done." One of the first things the couple learned was how Daniel got the disorder. One in 25 people are carriers. if both parents are carriers their child has a 25 per cent of having CF, a 50 per cent chance of _being a carrier, or a 25 per cent chance of neither being a carrier or having CF. A carrier has no symptoms, no signs. Lisa says that since the gene has been found, researchers have discovered over 800 versions of it. "In our case they found Tim's CF gene, but they can't find mine." What this means is that should Lisa's brother chooielo have children there is no way of knowing if he has the gene. What put an even greater stress on the Fritzes after learning this was the knowledge that she was in the early stages of her second pregnancy. "They told us we might want to wait to have more children until we knew better what we were dealing with," says Lisa. "I told Tim not to say anything about my pregnancy at this point. I didn't want UT, think about what it would mean. It was very, very stressful." After Daniel's diagnosis, he was sent home for about a week, then went to London. "We didn't know then whether it was for a visit or a stay," says Lisa. It turned out to be a meeting with the CF team there, after which the family returned home. It was probably about three months after this, Lisa says, that she contacted a nurse to see what they could do about her pregnancy. One thing they did know. "We knew we would keep him. It was meant to be." Though them were tests, the nurse said that as they couldn't find Lisa's gene, they would only add more stress if Tim's gene showed up. (Second child Darian was-born four months ago, a healthy, chubby- cheeked child with azure eyes and his brother's blond hair.) Though Daniel's case has been described as mild, he follows a strict treatment regimen, that has become as natural to this endearing toddler as climbing and chatting. Unlike some CF sufferers, Daniel does have' a partial working pancreas so he doesn't have as many medications as other children. One pill at every meal helps with digestion. "They break down food so I don't get tummy aches and don't get big pot belly," he says with help from Mom. And while he swallows them now without flinching,- Lisa says they used to have to shove them down his throat. Daniel must also be on a special diet that were it not for his illness, would be enviable. In addition to extra salt and high fat content, -children with CF are hungry a lot, says Lisa. "We have food in front of him all the time." Clapping is another part of the routine. This is a form of physical therapy to break up the mucous in the airways. The child is placed in special Positions, depending on the region of the chest to be drained and clapped over the lobes of the lungs. Twice a day for a month, followed by a month off, Daniel wears a "fish mask", or ventilin machine to clear dust, germs, bacteria or infection which may have gotten into his lungs. "But when he's sick, clapping and the fish mask are every hour, day and night," says Lisa. "People make me sick," says Daniel. "You can't break my heart more than by not staying away when you're sick," says Lisa, explaining that because of CF Daniel is more susceptible to illness, gets sicker than the average person, and stays ill longer. "There is a greater chance of him being in the hospital." Over Christmas was a difficult time, says. Lisa, because they came into contact with so many people. "He was sick all winter and couldn't go outside. Was that sad, Daniel?" "Yes. It took my winter away," he says, then tells of the snowman he watched his Daddy build from the window of their home. School too will pose challenges, that the family has barely considered. "It scares me to think about it," says Lisa. Often tired, Daniel may be in bed at 4 or 5 p.m. and not rise until 7 or 8 a.m. But then there are the times when he can be as rambunctious as any toddler. On those occasions he enjoys activities that help with his breathing. Jumping on his trampoline helps loosen mucous, swimming helps relax his lungs, while running and blowing bubbles improve his lung capacity. "His condition can change in an hour,': says Lisa. "He can be jumping on the trampoline then a half an hour later be down and out, gasping for air." Since Daniel's diagnosis Lisa -has become involved with the CF Foundation branch in Stratford. She has assisted with the recent fundraising Daisy Days, and plans to participate in the Zellers Friends of the Family Walk for Cystic Fibrosis, May 26. Her contact with the Foundation, however, has been primarily to help her gain an even greater understanding. "I just felt we knew enough about Daniel's case now that I could learn more from other parents about what the future might be." Looking at Daniel, and being asked to consider that future, Lisa struggles for a moment, caught between fact and the pain of its comprehension. Then with resolute optimism she lifts her bead and continues. "We've been told this is a milder case so we have that to be thankful for. There's always worse cases out there. God chose us because he thought we can handle it and obviously we can. We're not doing too bad." "With medication and research there's a lot of hope," she says, glancing at her handsome little man. "And for now we have him to hold and love every day."