Your child and Marfan or a related disorder
It is very important for children to be educated about Marfan at any and every age because knowing and understanding is always less frightening than what they are imaging. It is never too early to discuss Marfan syndrome with your child. Younger children tend to be more accepting of their disorder and are better able to cope.
While there is no “right” way to tell a young child that he or she has Marfan syndrome learning and talking about it from the beginning gives the child and the family more control. It is best that a child ears about how he or she is special from a parent or his/her own doctor. If a child has to have a lot of medical treatments, even surgery, explaining the medical reason helps even a young child understand why they are seeing several doctors. If the child isn’t having any medical problems, and just has yearly evaluations, parents still need to make it clear why those evaluations are necessary.
Here are some resources that may help you explain Marfan to your child.