Why I Fundraise

Merisa LePage
Mom to Sasha (living with CF) and Logan | Organizer of Superheroes Unite & The Royal Ball

My first memory of the journey through Sasha’s diagnosis was a call from a geneticist at London Health Sciences Centre. She told me that Sasha’s newborn screening came back positive for cystic fibrosis and that we would need to come to London the next day for more testing. I remember her saying that I probably didn't know what cystic fibrosis was, because most people don’t. But I did from my work with Shinerama. I knew what it meant to have a child with CF because during that time with Shinerama, I had met many local children living with CF. I saw how often they were in the hospital and how much medication and daily treatments they needed to do. And I knew the life expectancy. It was terrifying. And I was angry.

As a result of her diagnosis, I personally have been extremely dedicated to raising awareness and funds over the last 10 years. Our family has participated in The Walk to Make Cystic Fibrosis History every year since she was diagnosed. I was a Windsor-Essex Board of Director member for many years. We’ve hosted a bowling event called Strike Against CF multiple times. I am the Chair of The Royal Ball. And most recently, I organized a new event called Superheroes Unite in support of Cystic Fibrosis Canada.

I’ve found that my way of coping with her having cystic fibrosis has been to do what I can to help make sure that future diagnoses hopefully won’t have to be as scary.