Cystic Fibrosis or CF, was not always something that our family thought much about until January of 2010. My son Landon was born on January 6th 2010 and 3 weeks later we got the call, during the blood testing they do with the heel prick at the hospital your son has had a positive test for CF, please come into pediatric out patients to confirm with a sweat test tomorrow. We were also advised not to google anything until the clinic had a chance to meet with us. Definitely one of the hardest 24 hours in my life to stay off the internet. Our sweat test confirm our little guy had Cystic Fibrosis. CF, I had heard of it but really had no idea what this diagnosis meant as I am sure many people do not. CF is a fatal genetic disease that causes the body to have a salt/water imbalance which causes the respiratory, digestive system and other organs to be plugged with a thick sticky mucus making it hard to breathe and causing these organs to not function as they should. Who knew salt transfer was so important to your body!
Life with Cystic Fibrosis can be hard and exhausting, Landon spends 2-3 hours a day doing respiratory physiotherapy and inhaled medications to help keep his lungs clear before school and again in the evening before bed (you can see why Donald Physiotherapy was a huge draw to work at). When Landon is sick we must increase these to 3 times a day. He takes about 25 pills a day to help his body digest his food, as well as many vitamins and minerals to help absorb the proper amount of nutrients he needs. Even with the help of these enzymes, his body only absorbs about 85% of what he eats, so he needs to eat a lot to grow, and fight off infections. Simple colds can easily turn into a hospital stay for someone with CF so it is important to that treatments are never missed and Landon is constantly diligent in making sure he is eating healthy and maintaining his weight. Landon currently dances 5 days a week and will start up the soccer season soon. Our goal is to keep those little lungs as busy as possible! Staying active is an important factor in managing Landon’s CF, the healthier we can keep his lungs the longer his life expectancy will be and will push back the possibility of needing a lung transplant until there is a cure found!
When Cystic Fibrosis Canada was established in 1960 most Children with CF were not expected to live long enough to attend kindergarten! Today half of all Canadians with CF may be expected to live to 52 years of age or even longer, a huge accomplishment but it is not enough! Cystic Fibrosis is a progressive disease meaning life with CF only gets harder as you age and many are still losing their battle before they get a chance to finish school, get married, have a career or see their children grow up. You see with CF its not if its going to take you but a matter of when.
Did you know that May is CF awareness Month? Our main fundraising event takes place at the end of the month and we would love to see you come out! Although this community is small and CF is a daunting diagnosis I have never met a group of people who work so hard for the lives of the ones they love, they are filled with such hope that one day CF will stand for cure found. Our Walk of CF takes place May 26th at Blackfox distillery, (and yes there will be distillery tours :)) Armed with Harmony will also be there with music, games for the kids, and a complimentary bbq hosted by save one foods for anyone who's a registered walker!! It is defiantly a fun family event!!
So I formally invite you to come out and cheer Landon on as he walks to make cystic fibrosis history. Thank you so much for taking the time to learn a little bit about the life of someone with CF.
~ Shawn, Admin Assistant