We are from Switzerland and have a boy, born on 4th March, 1998 and his name is Angelo. When he was born, nobody realised that something is not as it should be. After checking him before leaving the hospital after birth, everybody said he is a healthy and very strong boy. We were very happy with our second boy and everyhing seemed to be in good order.

He was a cry and spit baby but nothing else at this time. He had no problems with growing he was drinking and eating as a normal baby. When he was 4 month old I realised that he is not grabbing toys or whatever with his litte fingers. Also he was and still is very tense. The doctor I had, still said he is a healty boy and the tense will go away and he will start grabbing everything, just be patient.

When he was 6 month old nothing changed and he still had the same problem. We first thought that the tense is coming from the stomach because he still had a problem to keep the mother milk and was giving it out the whole day but not loosing weight at all. He still was growing as normal.

So I went to an other doctor and wanted to have Angelo checked through. They found out that he is having semilobar Holoprosencephalie. It was a big shock for us and we didn't know what it means. Nobody could tell us what the future would bring. They also didn't know other children in Switzerland with the same disability.

What I also want to mention is that he is having a big head and not as others with HPE a small one. He also doesn't need any medicin yet.

So finally we found your page and are so happy to have at least here some addresses of parents/children with HPE. We don't feel that lonely anymore in that big world!

What we would like to know from others, what therapies can be done to help him to learn as much as possible.

If anybody would like to contact us please feel free to email us.