Cystic Fibrosis (CF) - if you're not familiar - is a cruel bully of disease. It picks on children. It gets them from the time they're born and it doesn’t allow them to live their fullest or most vibrant lives. It robs families of carefree days. It makes breathing a struggle and it puts the light out early on too many lives. The average life expectancy for someone with CF is 50.9 years old, which is a goal to be celebrated.
We are getting there, in terms of a cure, and so many strides and medical advancements in fighting CF have been made, even in the last 20 years. But it needs to move faster and farther because CF runs while we are walking.
I had a friend with CF when I was young. I met her when we were 11 years-old, both of us in the throes of our awkward stage. She was a tiny package but she was as full of personality as her body could hold. She told us about her disease with acceptance; she loved to laugh but with CF we had to be careful because laughing often brought serious coughing fits that had her struggling to breathe. Even the simple pleasure of a raucous laugh was denied to her. Sleepovers brought snacks and movies but also a bag of puffers and great fistfuls of pills.
This is a representation of the average daily number of pills for CF treatment. DAILY.
She was often in the hospital with pneumonia or other respiratory infections – sometimes for weeks at a time - and she missed countless dances, parties and other typical teenager events. CF kept her from thriving and she knew she’d likely never graduate college, get married, or have children.
And she didn’t. My friend died in a hospital hooked up to breathing machines when she was just 17 years-old.
There were many things my girlfriend couldn’t do easily - or at all. CF limits your ability to be active and despite willingness or want, there are too may things you can't do.
Think of all you've accomplished - all your children have or will accomplish - and imagine having to do those things while getting your breath only through a straw. CARSTAR sent me a kit to emulate how someone with CF feels when their breathing is constricted. I open the box and quickly closed it again. It contained a narrow straw and nose plug. I don't want to breathe that way, but I have a choice. Too many do not.
I tried some simple tasks while breathing this way: walking the dog around the block, making my son's bed, and putting groceries away. I felt dizzy and winded and had to stop. I was frustrated and angry and tired. But I took the straw out and drew a great breath and my challenge was over.
Could you go grocery shopping while breathing through a straw? Chase a toddler? Play in the surf? Have a regular childhood?
No.
Imagine all you can do. Now imagine all you couldn't. This is reality for one in every 3,600 Canadian children born with cystic fibrosis every year.
Why not take a day to walk for those who cannot? Why not walk for those whose lives ended too soon? Join CARSTAR Canada on Sunday May 31, and walk towards #AWorldWithoutCF.
There are things you can do to help, such as:
CF research has come a long way in the 20 years since my friend’s death but we still have a long way to go. People with CF are having children and living longer with the continued support from Cystic Fibrosis Canada, a not-for-profit organization that supports CF research, advocacy, and care. Another supporter is CARSTAR, a 15-year partner of CF Canada and the 2015 title sponsor of the Great Strides Walk for Cystic Fibrosis Canada. There is now hope that families can stretch beyond two generations of growth.
When I think of my friend, first I see her face. Then I see the face of her mother; a mother who had to bury a child. It’s a look I will never forget, and one that a cure for CF would eliminate from the faces of too many parents every year in Canada.
This is proudly sponsored by our friends at CARSTAR Automotive Canada Inc.
www.cysticfibrosis.ca/greatstrides/
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