Ethan Michael Shirley was born on May 24, 2003. We were not expecting him to live, as we had discovered he had Semi lobar Holoprosencephaly. The Dr's did not give us any hope. He would die at birth, before, or right after. He did none of the above. At 5 months he had a gtube and nissan, major seizures, and Diabetes Insipidus. In May of 2004, he had a central line placed and then in June and Emergency Tracheostomy. He came home and used a vent some times. He changed everything in my life and everyone around him with his Grace. He made people stop and think, "is that really worth complaining about?" My husband joined the military full time, where he had been Nat'l Guard (called up). In May of 2005 Ethan became sick with a virus of his lungs that my baby boy could not fight off, although he tried for 2 weeks. 6 days after his 2nd birthday he passed away on Memorial Day. He was everything to us and our 5 year old daughter, Kenzie. For while it seems each day gets harder, but I know where he is and I will see him again. I'm now working with a little boy who has a lot of the same things as Ethan, no genetic or HPE problems, but vent dependent, trach, gtube, chronic lung, and much more. Hard for a 8 month old preemie, he fights just like my Ethan did for his little life. Anyone ever looking to talk or whatever, email me. my hubby is in Iraq right now, and my baby that I take care of is in the hospital. If you know anyone who may need a family for someone to talk to. God is with us, and I know my Ethan was here for a reason, and he gave me and my family a whole new perspective on life as we knew it. I will never see life the way I did before him, and believe me when I say that is a good thing. I miss everything about him and will never forget him. Love...