Can you give me any info on Marfan's Syndrome?

My husband was just diagnosed today with a "mildly dilated aortic root". I was researching it online and was pointed to Marfan's Syndrome. As I was reading the symptoms of Marfan's I started freaking out b/c those symptoms describe my husband. He is 6'9", has a protruding bone, long fingers and toes, flat feet, stretch marks, back problems, joint pain and now the dilated aortic root. He is 29 years old and I'm reading that people with Marfan's if not caught early can die in their early 30's but if treated can have a normal lifespan of 70 years or more. Can anyone out there with experience with Marfan's give me any info....some hope maybe? My husband is going in for a CT scan on Tuesday to look at the extent of the aortic root dilation. Marfan's has not been mentioned by the doctor, should my husband bring it up? We just had a baby boy in April of '09 and Marfan's is a genetic order so I am also worried about him. Please, any info would be great.