Worse still, the average life span for anyone is 35-40 (meaning age at time of death, not how long you have after diagnosis); far too frequently, however, children and teenagers are struck down before they can ever have anything resembling a life.
There are no celebrities to help publicize the need for help or to educate the public, nor are there organizations offering support and help to those who suffer it, or for their families; medical poverty is the norm, along with guesswork from medical teams and abandonment by families, spouses, and friends.
It’s more than time for a change, it’s time for action. On August 17, 2011, we are asking that everyone who reads these words join us in lighting the darkness of ignorance by making luminarias and lining their driveways, walkways, porches and/or any path that leads to their front door.
Let the world know there is a danger, a nightmare no one knows about, and share hope with those who have little by lighting their darkness.
I’ll be lighting the first one, and on it will be written my husband’s name and the date of his death on one side, and on the other, LIGHT THE NIGHT FOR GARDNER’S SYNDROME.
Please email this to everyone you know; forward it, post it on a blog, print it up and put it on bulletin boards….but share it. Don’t let one more person die because the night stayed dark.