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Volunteer Advocate
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Meet Tim Vallillee

My Name is Tim Vallillee and I’m an adult living with cystic fibrosis. I live in a little community called Wilmot in the Annapolis Valley in Nova Scotia. Although I have limited employment opportunities because of CF, I am proud to make a living as an entertainer for all ages! I’ve been a musician for nearly 30 years and have also been a clown and magician for about 20 years. My wife, Agatha, and I have been together since 2000 and we have a beautiful 10 year old son named Isaiah.

In 1968 I was diagnosed with CF at the age of 7 months when my mother happened to mention that I tasted salty when she kissed me on the forehead. At a time when CF was a death-sentence, I was lucky enough to have Dr. Gillespie in my corner, as he would be the ‘word of God’ for the next 20 years of my life.

As I got into my teens the ugly head of CF started to show with more battles with pneumonia, less energy, nasal polyps, anemia, constant battles to maintain my weight, and the continued fear of when my number would be up.

I decided to quit University after two years of study when my best friend with CF died and decided to pursue a life of music, singing, photography and entertainment. It was the best decision I could have made in the shadow of incredible sadness.

The fact that I became a musician and singer helped me keep my CF in ‘check’ as it became an incredible barometer of my health. I knew if I could not sing to my potential then something was arising in my body that told me I was in trouble. The fact I became a strong singer also helped me use my lungs in a way that keep them in particularly good shape in general.

Photo Credit: James Skinner

Although I grew up with a potentially deadly illness, I never let it get the upper hand. I listened to my doctors as best I could but MOSTLY believed in the possibility of a major control or CURE for CF in my lifetime!

My dream came true in 2014 when the discovery of Kalydeco came to my driveway delivered by an unassuming Angel named Barry. He was the delivery man of the Holy Grail of my dreams.

My wife and family and I as well as an incredible community of support fought the Nova Scotia government for two years for this day. Life has not been the same since.
LET ME BE CLEAR… as incredible as Kalydeco is, it only helps about 3% of the CF population, so our work is FAR from over!

Within a couple of months my regimen changed dramatically. I didn’t have to sleep with oxygen anymore; I didn’t have to do aerosol masks anymore; the amount of drugs I took decreased; my energy increased immensely, and my lung function jumped nearly 20%!!!!!!!!!!!!!

I could also do things I had only dreamed about before. I could go hiking for hours without stopping to catch my breath, I could sing and hold notes longer than ever before, I felt the muscles in my legs when I walked or jumped on the trampoline with my son! I even went snowboarding for the first time in my life! My bucket list could not only be checked off, I could add all the things I never thought I could write on it now knowing that it was possible where before it was IMPOSSIBLE!

I want CF Canada to be the charity of choice for Canadians this holiday season because EVERYONE deserves to look forward to a normal life and many more Christmases to come. It seems like such a ‘normal’ wish, but when you live with the dark cloud of CF over your head, looking forward is a battle and a gift at the same time!

I love the fact that there are now a few of us success stories to prove that donations make a REAL DIFFERENCE!

Milestones matter for those living with CF and those who support us.
When I was a kid I wondered if I’d graduate from High school. I did!

When I was an adult I wondered if I’d meet the right girl. I did!

When I was young I wondered if I’d ever be a Dad. I did!

When I was a kid I dreamed of turning ten years old! Next month I turn 50!!!

Now I dream of being a motivational speaker and being a Grandpa… I’ll have to get back to you on that.

For Tim and everyone else affected by CF, be the reason for a cure: http://bit.ly/2ADWJym

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