18 years ago, in August of 1981, our daughter Lindsey was born. After having a completely normal pregnacy, and 3 other normal children, it was quite a shock to hear the diagnosis of alobar HPE (13th chromosome deletion). She weighed in at 8 lbs. 3 oz. and had no facial deformities. We were told that she would not live long, certainly not more than a month. So, we took her home to love her and give her as much of 'life' as we could. We love her more and more each day, and we are still showing her how much fun life is.

Of course, we have had our bad days too. She has had many surgeries. She has had shunt, hip, g-tube, and baclofen pump surgeries. She has been very sick with a few of her shunt revisions, requiring a months stay. On a couple of occasions, we almost lost her. We are fortunate to live within 45 minutes of Childrens Hospital in Seattle, so we always stay with her around the clock, sometimes taking turns, and other times we are all there!

Lindsey is a very happy little girl, who doesn't speak or walk. She can't hold her head up, or hold anything in her hands. She does love music, bright lights, and boat rides. She attends school 2 days a week (our choice) at our local high school in the special education classroom.

We have been looking for other parents of children with HPE in Washington state for 18 years, but have not found any. If any of you are from this area, or know of anyone, please contact us or pass our address on to them. Carol Martinsons - Renton, Washington