My Poor Son
Let me start by saying i dont have Marfan Syndrome but my Son does.We have no family history with him it just came out of no where and im so scared for him. My Son James is eleven and whilst he always looked different from other kids i didnt know why. James is 165cm tall and only 38kg in weight he runs out of breath very quickly and has most of the other symptoms relating to Marfans. We only found out a month a go just before Christmas and all i wont to know is that he will be ok I DONT WANT MY SON TO DIE I only found out yesterday that james scoliosis is so severe that he will need surgery if anybody out there has been through this and has advice for him please post them in the comments section. I would also like to say that i do understand that marfans isnt a death sentance but the thought of hes aorta ruptoring is more than i can bear to think about.