Emily Bateson, 8, Pitt Meadows, B.C.
If you ask Emily Bateson, having cystic fibrosis (CF) does have certain advantages: “At Christmas time I get extra presents from the Kinsmen,” says the exuberant eight-year old. “And when I was six I got a free pass to Disneyland, and we didn’t have to wait in any lines!” Her mom Karen says, with a chuckle, “After that she said she would never complain about having CF again.”
Although Emily is not generally given to complaining, having CF isn’t easy. She has to do her treatment twice a day – putting on a mask and blowing into a pressure valve at 30 second intervals for 15 minutes – and takes a total of about 30 pills a day. She goes to a CF clinic every five weeks and has had five hospital stays since she was diagnosed at the age of three months, after doctors were puzzled by her lethargy and lack of weight gain. “Her diagnosis was very sad, obviously, but in a way it was a relief because we knew what was wrong,” says Karen, who lives with husband Curtis and son Cody.
Emily’s diagnosis also prompted Karen’s cousin to have her daughter tested. “Melissa is 50 days older than Emily and had been having similar problems,” says Karen. “We thought, could she have CF too? They had her tested right away and it turned out that she did.” The two girls, who live 10 minutes away from each other, share a special bond. “I’ve never seen them talk about their CF together, but they have a very strong connection. They’re like sisters.”
The Batesons take part in their local CF walk in Pitt Meadows, one of hundreds across the country, and last summer Emily spoke at the national convention of Carstars, an auto body shop whose national charity is the Canadian Cystic Fibrosis Foundation. Her upbeat and moving speech, about her daily life with CF, got a standing ovation from the crowd of more than 100 people. But Karen and Curtis try not to make CF the focus of Emily’s life – she loves to draw and colour, do gymnastics and tap dancing, and play the piano. And they make an effort to not disrupt her little brother Cody’s life, when her CF becomes a priority. “When Emily was in the hospital in November, I said to Curtis, ‘Make sure Cody gets to his skating lesson,’” says Karen. “I want his life to feel the same, no matter what.”
But some days are difficult and Karen tries hard not to think about the future. “I have great hope that there will be better treatments for CF in the future, but I force myself not to think about it too much,” she says. “The upside is that I think CF has probably made me a better parent. I celebrate everything both my kids do – I don’t take things for granted. We cherish our time together because we have that ‘if’.”
What it is: Cystic fibrosis affects the mucus-secreting glands, which in turn interferes with lung function and digestion. Normal mucus is thin and slippery, and helps keep the lungs and air passages clean by carrying off germs and dust particles. People with CF have sticky
mucus that clogs the small bronchial tubes in the lungs, making it difficult to breathe. One in every 3,600 Canadian children is born with CF.
Signs and Symptoms: Difficulty breathing, constant cough which brings up thick mucus, excessive appetite, with weight loss, bowel disturbances, such as intestinal obstruction or frequent, oily stools, skin that tastes salty, repeated or prolonged bouts of pneumonia, failure to thrive.
Treatment: Daily routine of physical and inhalation therapy to keep the lungs free of congestion; high-calorie diet and regimen of pancreatic enzymes and vitamin supplements to ensure adequate nutrition; regular visits to a CF clinic.
Cause: Genetic, occurring when a child inherits two defective genes, one from each parent.
Long-term impact: A growing number of children with CF are surviving into adulthood. Most people with cystic fibrosis go to school, pursue challenging careers, play sports, enjoy active social lives and have families of their own. However, lung disease eventually places
increasing limits on their daily lives and they can become candidates for double lung transplants.
—Adapted from the Canadian Cystic Fibrosis Foundation website, www.cysticfibrosis.ca
Published March 2010