Paul was born on 6/01/1998. We had no idea of his condition. It came as a real shock when Paul was born with a cleft lip and palette and an even bigger shock when we found out he had no eyes. We were told that he would not live passes 3 months. He is now almost 5 years old. What a road to walk. I just cannot believe there are so many people walking that same road. Paul has one artificial eye and it really helps us to see his emotions and we can tell if he is awake or asleep. He really is the most beautiful child with thick red hair and the most wonderful loving nature. Paul has semi lobular HPE. He cannot walk, talk, sit or stand. He was born with siezures and we still really battle to control them. He never got sick once in his first year of life but since then we have battled. I loath winter. Isn't it amaizing how you can love someone so unconditionally. He has shown us how much strength we somethimes feable humans possess. I cannot believe that someone who suffers so much can be so full of joy. He will come out of a nasty fit smiling. I sometimes feel so guilty when I complain. You just cannot explain to parents with normal children how children like Paul are such a blessing. Our lives will be so empty without him. We know we don't have him forever and when he gets really sick I ask God to take him to stop his suffering but when he gets well I beg God to give us more time with him. This is the first time I am speaking out about hy feelings and it has taken me along time to realise I don't have to be strong all the time. I really would appreciate contact from soe people who can share with us . Carol and David