It has been 8 short years now that we lost our daughter to alobar HPE at 4 months of age. We are still trying to understand why and how this happened to our little girl. We reqested information from the hospital that our daughter was born and died at for her records and any information that they may have on her and we still have no response from them. We were never told that the Carter Center existed, we were just prepared and told that they cannot say how long she would be here with us and to enjoy every moment with her. Which we did and do not regret a single second of our time with her. She touch so many peoples lives including ours. Since that time we have had another child who is now almost 7 years old and has developmental delays and has come up with nothing in all the test that was performed on her to attempt to find out what happened to her 7 years ago. She was tested for HPE and that came back normal. We want to know if our two girls are linked in some way. She also has that special gift of touching peoples lifes and ours too. She lights up the room when she walks into it just as her older sister did when she was with us 8 years ago. It still has not gotten any easier without having our Sydney here with us. We miss her and think of her every minute of everyday. Please if there is anyone with information that they can share with us we would deeply appreciate it. I only know what I can find on the intrenet about HPE. I know I can never be told exactly why our little girl had HPE, but we are just wanting to understand it better. We have choosen to not have any other children due to not knowing if it is something genetic even though we were told it was not. Don't get me wrong we would not change a single moment we had with our little girl, but not knowing why this happened to her rules out us not wanting to go through this again. She gave us a life time of memories that we will never forget. Thanks for taking the time to read our story...