“My second daughter was born in 1997 and at three weeks of age had dropped below her birth weight, for what seemed like no reason,” says Mary-Ann Clift. “My mother insisted that we take her to the doctor and have her tested for CF. Her instincts were correct. My beautiful, blonde haired, blue eyed baby had cystic fibrosis. It was a shocking moment; staring at my perfectly formed baby and knowing that a tiny defect inside the cells in her body would change the course of her life. Shortly after she was diagnosed, I woke up one morning to the sound of a basketball being bounced against the side of the house. Then I realized that it was the sound of my husband’s hands clapping on my baby’s chest in the room below me. I still could hardly believe it. That sound of clapping became a comfort sound in our home. It was the one physical thing we could do to fight an invisible, progressive disease.”
Mary-Ann and her family have lived with the reality of cystic fibrosis for the last 14 years although it had an impact on her life much earlier than that. She moved to Chilliwack with her family in 1968 after her father purchased Hipwell Drugs. “He owned it for about five years and then went to work as a pharmacist at Zellers before opening up Nelmes Pharmacy in 1977,” she explained.
As a youngster, she was fascinated by a picture in the family home of a baby boy sitting on a coloured rocking horse under the Christmas tree. It was a picture of her brother who had lived and passed away at eleven months, the year before she was born. “It made my mother sad when I asked about him so I didn’t get many answers about Andrew. The doctor had told my parents later that he had passed away from something with a fibrocystic nature,” she said. It wasn’t until later that it was determined that cystic fibrosis had claimed his life. “I only knew that those words, cystic fibrosis seemed a little scary to me and that they made my mother sad.”
She grew up with two brothers; older brother Brad and younger brother Jeff. She loved sports and was especially passionate about volleyball. I played up until two years ago,” she said with a smile.
As she approached graduation, Mary-Ann thought about being a PE teacher but that didn’t happen. She loved to write and thought about being a writer but never pursued it. “I had spent many hours as a kid working in my dad’s drugstore and loved the atmosphere and working with the public but I didn’t think of myself as being a pharmacist,” she said honestly. When she was 24, that all changed, though. “I had worked for a few years as a pharmacy technician, having been trained by an exceptionally good technician,” she said. Mary-Ann became quite good at it herself and when she left Chilliwack, she always seemed to find a job as a pharmacy technician. Then, one day, the role of a pharmacist seemed more appealing than her job as a technician and she returned to school and earned her Bachelor of Science in Pharmaceuticals. Mary-Ann was now a pharmacist.
She married Doug and the couple had a beautiful daughter named Alexis. Two years later, they were blessed with Lauren. Three weeks after her birth, their lives changed forever. She was diagnosed with cystic fibrosis. “We were at Children’s Hospital within days, learning how to care for a baby with fibrosis. Our fridge was covered with medication charts and I remember counting that our baby needed seventeen doses of medications throughout the day and three, daily sessions of postural drainage therapy to keep her lungs clear. We would tip her at different angles and positions and clap her chest or back for three minutes in each position. It is life changing to be told that your child has a progressive, fatal disease for which there is no cure,” she explained methodically. With cystic fibrosis the mucus that is produced in the lungs is thick and sticky. It clogs the airways and, if not cleared, can lead to recurrent lung infections and lung damage. The pancreas is also compromised and for those affected by the disease; pancreatic enzyme supplements are usually required to aid digestion. “Lauren takes 25 pills a day just to be able to digest her food. At times, her condition requires that she takes up to 40 pills a day,” she said. As a result of the affect on the pancreas, CF-related diabetes requiring insulin injections can also be a complication. “Thankfully, Lauren doesn’t have that. That would be terrible. She loves food too much,” she laughed.
Physical activity plays a large part in keeping Lauren healthy since it aids in clearing mucus from the lungs. She’s quite the soccer player and this has helped her maintain lung function. Those affected by CF may also sweat more than others and are at higher risk of dehydration. Mary-Ann explained that when it’s really hot outside and with prolonged exertion you can actually see salt crystals forming on Lauren’s skin.
“CF is a relatively invisible disease. You can’t really see that there’s anything wrong physically but there’s so much happening behind the scenes. Lauren is still healthy at 14. She’s an athlete, a musician, an artist, socially vibrant and thrilled with life. What a shame to see this life and other young lives cut short by this disease,” she said. That’s where research comes in but there has to be money available to fund the research. So, Mary-Ann decided to take part in the annual Gear Up 4 CF Banff to Vancouver event. It’s 1,200 kilometres of determination and hope in finding a cure for cystic fibrosis. “We start off on June 18 in Banff and arrive in Chilliwack on June 26 and then ride into Vancouver, ending at BC Children’s Hospital on that day. I’m asking for help as my goal is to raise at least $5,000 which will go towards research. I am riding my bike for my daughter Lauren who lives with the disease every day and who tirelessly faces each day of therapy and medications with little complaint. For her sister, Alexis, who has been the understanding sibling. Also, for my brother Andrew, who paved the way for children with CF to live into adulthood and in memory of my mother who gave my daughter the gift of an early diagnosis. Whenever I am training and my lungs hurt from the exertion, I am reminded of what these kids go through and then I’m able to carry on,” she said.
Mary-Ann is an inspiration to me as a mother. Through dealing with CF, she has learned the importance of living one day at a time; one moment at a time. She has come to appreciate the value of spending precious time with family, creating life-long, special memories. She has learned to deal with what is important, rather than sweating the small stuff. We so often neglect to thank the Good Lord for the blessing of healthy children and we often take our children for granted. Hug your children, tell them you love them and spend as much quality time as you can with them. That’s what’s truly important. That’s the lesson that Mary-Ann reinforced today.
If you’d like more information on the Gear Up4 CF call 604-436-1158 or log onto www.CFVancouver.ca” or www.GearUp4CF.org
• The Cystic Fibrosis Foundation is still looking for more cyclists to participate in the final leg of Gear Up 4 CF on June 26, which is a bike ride from Chilliwack to BC Children’s Hospital in Vancouver. Registration is $125 and participants must raise and additional $375.
A celebration will commence at the finish line.
To sign up, or to support cyclists, visit www.gearup4cf.org