It has been a long while since I have posted on this site. My son Andrew (Andy) Brayden Stanley was born on August 20, 2003 and passed away on August 10, 2004. It has been three years now but it seems like only yesterday. Andy had lobar HPE with midline defect (cleft lip and a flat nose) he was small at his death he only weighed is 11 lbs. but he was 26 in. long. he also had a small head and close set eyes. If you have saw any pictures of HPE kids mine looked exactly like the ones with the same facial features. He also had lots of medical problems. He had 20-30 seizures a day, diabetes insipidus, low growth hormone, hypothyroid. My son was much more than HPE though. He pushed himself up at around 2 months old and could hold his head up around 1-1 1/2 months. He would smile and giggle every once in awhile. Once he tried to grab a toy. The greatest moment I ever witnessed was when my precious son out of the blue said his first word. It was "NA NA" (who knows what it was because of his cleft lip, I like to think it was MA MA). I was holding him at the time and stood up and danced around laughing and crying at the same time. This wonderful child who every one since his birth said would never learn or do anything spoke TWO syllables. Well that is all for now. If you want to read more about Andy and his birth and such. You just need to look back on this site around his birth (August 20, 2003). I hope my sons story gives you hope. I know he did pass away and sadly a lot of HPE kids do but the most important fact to remember is the doctors don't know everything only God does. Trust in HIM. God bless all of you.