It seems like I get an email just about every week from a parent telling me that his or her child has just been diagnosed with the cystic fibrosis. The tone of each email is the exact same. There’s some mix of confusion, frustration, anger, sadness and determination. I sympathize with parents who find out that their son or daughter, the light of their lives, will be faced with an uphill journey through life. I also applaud these parents for taking a very brave step into the unknown. It takes a lot of strength to start asking questions about something as serious as cystic fibrosis.
I can’t even imagine how vulnerable my parents must have felt when I was diagnosed, but I know the resources and friends available to them at the time helped to reassure my parents – so I try to pay it forward.
Since this past August, I have been capturing GoPro footage of my day-to-day life with CF, and today I am going to release the first part of my new series Living With Cystic Fibrosis.
I want to show people how active I can be despite undergoing hours of treatments each day; despite taking over 50 pills each day; despite occasionally having an IV placed for several weeks at a time. I want to show how being compliant with my medications allows me to have all of these great opportunities. I want to show the parents of a newborn who was recently diagnosed with cystic fibrosis that their child will grow up to live the life that I am capable of living.
Enjoy my first foray into filmmaking, and take a look around my NEW YouTube Page: HERE.
