IAmA father of an 8 day old baby dying of a rare genetic disorder AMA.
Last week my daughter Lily was born. Two days later my world was turned upside down. My baby girl was diagnosed with Zellweger Syndrome, a rare (1:50000) genetic disorder that is incurable. Over the last week, my wife and I have been attempting to put our lives back together.
I am hopping this AMA will bring some awareness for Zellweger Syndrome and possibly help anyone that may find themselves in a similar situation.
More info can be found here: https://ghr.nlm.nih.gov/condition/zellweger-spectrum-disorder
Proof (if more is needed mods please PM me): https://www.caringbridge.org/visit/lilycostello
EDIT: Many people seem to be afraid to ask insensitive questions. PLEASE ASK WHATEVER YOU WANT.
EDIT 2: A couple of folks have graciously offered to help in case we would like to adopt. We do have a GoFundMe that can be accessed via the caring bridge link in the proof section of this post. I really appreciate everyone being so supportive.