29 March 2010

65 Red Roses

Young children with CF are often taught that their disease is called "65 Roses" since it is easier to say than "Cystic Fibrosis." 

That is the name of a new documentary about a young Canadian woman with CF named Eva Markvoort.  The documentary, called "65 Red Roses" actually follows Eva's efforts to get a new set of lungs (something many CFers choose to do when their lungs eventually begin failing them.)

We found out about the documentary a few months ago and are excited to eventually get to see it.  (You can watch the trailer here.)  We realize that there is a high likelihood that Bennett may be faced with this decision as a young adult.

Eva's story is a compelling one made even more real through a detailed and gut-wrenching blog she has kept about her battle with CF.  

However, this weekend, we learned through Eva's blog that despite efforts to maximize the medical technology available, her lungs failed her.  Eva passed away on Friday.  She was 25.

And a few weeks ago, she put out a "goodbye" video on Youtube where she struggled between breaths from an oxygen tank to say goodbye to the online community who had fallen in love with her.   She had known for weeks that she was dying.

Having an online community of other Cystic Fibrosis families is both a rewarding and devastating experience.  Across the internet are fingerprints of young CF fighters and bloggers who eventually succumbed to this horrible disease.  We receive updates of the latest CF news through "Google Alerts" and regularly read obituaries of young people who died of CF.

It makes us sad.  But it also helps us to better remember to live in the present.  We feel incredibly fortunate to be at the beginning of this journey.  We are better able to appreciate every day with our little man (and his big brother too).  No day is promised to us.  Each and every breath we take comes from God alone.  

No comments :

Post a Comment

We love to hear from you! Please leave your comment below!

Note: Only a member of this blog may post a comment.