Chris & I are proud parents to a wonderful, 9 year old girl named Nicole. She was born Feb. 22, 1990. I had a very easy pregnancy and carried her full term with no indication anything was wrong. I had an easy delivery and she looked beautiful! We were very happy as she was our first child. When Nicole was about six months old, the doctors noticed that her head wasn't growing as fast as it should. So, we went through some blood work to test her thyroid, etc. and nothing came back abnormal. So, we plugged along thinking everything was okay. Then, when Nicole was about 10 months old, she wasn't sitting up, crawling, etc. and I asked the pediatrician if we could start her in therapy. He thought that would be a good idea, but he said he didn't see enough characteristics to say that she had CP. So we started her in physical therapy at about age 1. Then since we were considering having more children, we did some genetic testing and had an MRI done on Nicole. She was 18 months old when we found out that she had lobar HPE. We were devestated. She was a very alert, happy baby and we couldn't believe it. The main point that I want to stress to anyone with a child with HPE is that they are truly a blessing from God. Also, without God in our lives giving us the strength and wisdom to deal with this, my husband and I would not have survived. Also, on the positive side, Nicole has never needed any medication. She talks very well, she walks with help with a walker, she can move herself any place she wants to go in her wheelchair, she can army crawl on the floor, and most of all she is very funny and happy with a smile on her face from the time she wakes up to the time I put her to bed! Last year, we let her join the special olympics and she has competed in bowling (placing 1st) and basketball. She enjoys it so much! Nicole attends a regular elementary school where she has an aide assist her throughout the day. She also receives special services from the school district such as speech therapy (for processing problems), occupational therapy, and physical therapy. She's in the 3rd grade, but doing probably kindergarten level work. She can write her first name, but she has trouble writing a lot, so they use a keyboard, computer, and stamps to help her. She has a lot of friends - she tells us "she knows - she's very popular"! She makes us laugh! I'm not saying we haven't had any problems. She had to have hip surgery last year to help her hip not to dislocate and was in a body cast for 6 weeks. I also have to work because I carry health insurance on Nicole and that has been difficult from a stand point of finding day care for her, but so far God has seen us through. I hope that seeing what Nicole can do with HPE will encourage other parents out there with infants to not give up hope. This is the first I have heard of any organization for parents and I know it would have helped me in 1990 to know other people's stories. If you want to contact me (Carrie, Nicole's mom), please feel free to e-mail me back.