I am the mother of a 2-year-old boy with a fatal lung disease, cystic fibrosis, AMA!
My name is Juliana, and my son, Eli, is turning 2 tomorrow. At birth he was diagnosed with a fatal lung disease, cystic fibrosis. I keep a blog called Hi, this is Eli, but our story has also appeared in The Oklahoman, where I work, and my blog has been shown love from the NYT.
For proof, here is the latest column I wrote for the paper about facing my son's fatal disease. I swear I rarely enter the state described. Also includes audio of me in the moment I learned he has this disease. Proof
UPDATE: I started this during my lunch break at work and need to take a break to finish my day. I am blown away by your thoughtful questions. This is my inaugural Reddit post. Thank you for being inquisitive and interested.-j
UPDATE: Home now. Not able to answer throughout the evening but I'll be visiting the page as much as I can.