My nephew Scott Free is doing a 112K ride next Sunday, Nov 3, to raise money for his daughter, Addie Free, who has Cystic Fibrosis. We would love fans to help support Scott and our family in this very worthy cause. They can read more about his ride and easily donate via the following link: http://bit.ly/192pLVB
A very moving essay written by Addie's Mom, Elise, 2012:
I'm the parent of a child with Cystic Fibrosis. The words chronic, fatal and illness are part of the vocabulary of this disease. So, I am the parent of a child with a chronic, fatal, illness.
On every brochure, pharmaceutical pamphlet, insurance paperwork, government form, and authorization, my daughter's condition is defined in these terms. Fatal, meaning she is going to die from this disease. Chronic, meaning she will have this forever. Illness, meaning sick.
In six years, I have never used these words in conversation. Not because I'm in denial. I know my daughter's condition is all of those words mentioned above that I will clearly not mention. But there is something about defining her condition that makes it true, makes it permanent. Unchanging. And I don't believe that for a second.
The definition of Cystic Fibrosis is this: Cystic fibrosis or (CF) is an inherited chronic disease that affects the lungs and digestive system. A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening infections; obstructs the pancreas and stops natural enzymes from helping the body absorb food. That's the definition. But basically, it's a sucky disease that no child deserves.
My daughter's plumbing just doesn't work. So every day we do a roto-rooter type treatment on her lungs. I hook her up to a nebulizer where she inhales bronchodilators, antibiotics, pulmozyme, and other life-saving or death-preventing (depending on how you look at it) medications. She wears a vest (like a very fashionable pneumatic jackhammer) that shakes her chest, so she can cough up copious amounts of mucus. She takes pills to eat, pills to poop, pills to breathe, pills to absorb food, and pills to absorb the pills. She has a feeding tube at night to ingest the calories she can’t ingest during the day. Like I said, a sucky disease.