Oh, I hate to hear that, Rachel! Little Diane and Dustin talked about it for weeks before the wedding, and after seeing what her dad has gone through and passed down to Lacey, she knows how fortunate she is to be mildly symptomatic. So together they decided that Marfans stops with her. Lacey is five years older than Little Diane (previous marriage) so she knows she has no control over what Lacey does, but she says for our family, Marfans stops. So there will be no great-grandbabies from them, and that's okay - I'd rather keep her around as long as possible and I admire Dustin for not only understanding but for backing her 100%.
There are lots of different kinds of connective tissue disorders...the two I am most familiar with are Marfans and Epidermolysis Bullosa. Genetic testing is a huge part of diagnosis. Please tell your friend for me that there is life with Marfans and it can be a very good life. Diane's dad is active, plays drums in two different bands, and is the stage manager for a huge, well known club in Sioux Falls, setting up shows for some very big name entertainers. Little Diane is otherwise healthy and very happy, so although Marfans is a scary condition it's also much more manageable than it once was. Many years ago there was an epidemic of basketball players dropping dead on the basketball courts, remember? As it turns out, coaches love kids with Marfans because they are flexible, are usually extremely tall, have disproportionately long limbs and extremely long fingers. Talk about a basketball coach's dream player! But these kids also had undiagnosed Marfans and their aortas would just let go with exertion. Today things are so much better for folks with Marfans! There is a National Marfan's Foundation that she can contact if that ends up being her diagnosis, and they have tons of up to date (and calming, I know well!) information. They are also an excellent resource.