My family has a peculiar case with Marfan Syndrome.
Here's the story: My father and his brother married my mother and her sister (two brothers married two sisters) and each family had six children. My uncle and aunt had six children with Marfan Syndrome and all but one (he's 63 and 6'8" tall) died before their mid-20's. All the children from the union of my mom and dad were unaffected. I'm the tallest in the family at 6'0". We don't understand it.
You have an interesting story. Does the Syndrome need genetic material from both parents? Or--I would guess-not all children of affected parents carry the genetics that cause it?