Todd and I were friends before we started dating. After we were dating for a while, Todd told me that he had Marfan syndrome. Of course, I had never heard of it before and he explained to me what it was. Maybe because I didn't know anything about it or maybe just because I was young, I didn't realize how serious it could be.
A few months after meeting Todd, he had to have back surgery to remove the rod in his back. Only later did we talk in depth about this surgery and I found out the risks that were associated with this surgery, even though they were less than the first surgery.
A year later, Todd had a detached retina and had to have emergency surgery. This was my first experience with actually seeing him affected by something that was a direct result of Marfan syndrome. I didn't really know how to act but just gave him time to heal.
Since I have known Todd, the adverse effects of Marfan syndrome have not really manifested themselves in him. I know that this could change at any moment and was definitely not the case while he was growing up and in his early 20's.
When we were thinking about having kids, we went to see a genetic counselor. By this time, I knew much more about Marfan syndrome than I did when I first met Todd. We didn't really learn anything from the genetic counselor that we didn't already know. It would be a 50/50 chance that any child we had could have Marfan syndrome. If we had a child without Marfan syndrome, we could stop from passing it on if we didn't have any more children.
Some people have told me that I was brave to marry Todd and have children with him knowing the potential outcome. I never even gave it a second thought. The way that I see it, we already knew that there was a 50/50 chance that our child could have Marfan syndrome. I was already prepared for the possibility. Anyone could have a child that had a physical or mental disability and not be expecting it at all.
Finding the person that you want to spend your life with is worth any hardships that you may have to overcome!