May is Cystic Fibrosis (CF) Awareness month.  I was 6 when I first became aware of CF – it was the evening when my parents brought my sister home.  Lisa was 6 months old when she joined our family.  

At the age of 6 with 2 younger brothers, I was SO EXCITED to finally have a sister!  I remember my parents asking me to go upstairs to get her a diaper.  I didn’t want to miss anything so I ran upstairs and back down as fast as I could.  Unfortunately, I was all dressed up and wearing my penny loafers and I slipped on the carpet and kicked my new baby sister in the head…not a great start, but things went up from there.

Growing Up with CF

People with CF have issues with both their lungs and their pancreas.  Their lungs secrete a thick mucus that can make breathing a real challenge and their pancreas does not create enzymes to digest their food.

As an infant, Lisa and I shared a room and she slept with an oxygen tent over her crib.  She also had “treatments” twice a day.  She would inhale a Ventolin mask and then have physiotherapy on her lungs while lying on a downward angle. Initially my parents just used their hands to “clap” her chest and when she got older, they had a machine to do the clapping.  This helped to keep her lungs clear.

When she was an infant, I remember all of us sitting around the kitchen table opening her enzyme capsules into apple sauce.  At a very young age she was swallowing them whole though.  I think she was about 8 when she started swallowing handfuls of pills; I was in awe of her!

Until she was in high school, Lisa was relatively healthy.  It was at that point that she started getting more and more chest infections that quite regularly required hospitalization for IV antibiotics.  I can still picture her standing in the kitchen with her head in the freezer because she found the cold air helped her to breathe.

Mila Mulroney

Mila Mulroney was the Celebrity Patron for the Canadian Cystic Fibrosis Foundation in the 80’s and 90’s.  I have always had a lot of respect for her, and that grew when she visited Kitchener in the fall of 1988, just weeks after my sister died.  

In preparation for her visit, the local CF chapter created a quilt for her.  Many of the local kids with CF, including Lisa, created a square and some of the very talented volunteers worked to make the quilt to present to Mila Mulroney.

When Mila was told of Lisa’s passing, she made several attempts throughout the day to contact my mom to express her sympathy.  Unfortunately, this was before the days of answering machines, and no one was home, so she took the time to jot a message to my mom expressing her sympathy.  

According to the Cystic Fibrosis Canada website, CF is the “the most common fatal genetic disease affecting Canadian children and young adults.”  In May their goal is to raise awareness of the disease and raise funds for research into a cure.

#Farwell4Hire

Readers in Kitchener-Waterloo will have heard of Mike Farwell and his annual campaign to raise funds by doing odd jobs for families throughout the region.  The campaign is called #Farwell4Hire.  Growing up our families knew each other through the local CF Chapter; I even babysat them a few times.  Mike had 2 sisters with CF, Luanne and Sheri, who were unfortunately taken much too young, just like Lisa.  

Since 2014 he has worked day and night in the month of May to raise almost $650,000 so this disease can be cured.  The campaign has grown to include an online auction and 50/50 draw, beer and butter tarts, and all kinds of branded merchandise from t-shirts to bbq sauce. Be sure to check out their website and follow him on social media.

Both the Corriveau’s and the Farwell’s became aware of the toll this disease can take by watching family members suffer.  

There has been much progress in the 30 years since we lost our siblings, but researchers are still looking for the cure.  Please do what you can to increase awareness and/or donate to help fund research if you can so we can #cureCF.

To learn more about Lisa’s story, see Love you Forever, Lisa.