The median age of survival for Canadians with cystic fibrosis was 50, and only 40 for Americans, researchers found after six years of analysis.
I’m, literally, sitting here weeping with joy at the news that there are parents out there with kids with Cystic Fibrosis who are living to 50 years old. And beyond. 50 years of being able to hold your child. 50 years of being able to tell them RIGHT TO THEIR FACE how much you love them. 50 years of hearing their voice and gazing at their beautiful face. 50 years before you have to watch the light go out of their eyes and feel what can’t be described.
Of course, that is in Canada. In the US, we take 10 of those years away. We let our children with Cystic Fibrosis die 10 years earlier. We sacrifice 10 years of their lives. 10 more years of waking up each day trying to understand why. 10 more years of suddenly bursting into tears just out of nowhere. 10 more years of a pain in your chest that is so intense you feel like you’re dying…and you don’t care. 10 more years of your wife saying “I don’t think you should watch that” whenever a movie or TV show has a scene where a child dies. 10 more years of disbelief and still trying to make a deal with God to take you but just let him come back.
Please God. Just for one minute.
All of this to maintain the most unethical, inefficient, cruel, evil health care system in the developed world. Because it makes a fortune for the privileged few.
Brandon Geoffrey Ware would have been 35 this year. But he’s not.
It’s not joy any longer. Damn each and every person that supports this madness.