Mark
Posted at 4:59 PM

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Here is Mark, my little prince. We adopted Mark from Guatemala when he was 6 months old and within two months of having him in our lives, we were lucky enough to find out that he has Marfan. I say lucky, because since we know, we'll be able to take care of him the way he needs to be taken care of.

As far as adoption goes, it is the most wonderful process! This little boy entered our hearts before he was even in our arms. And when we held him for the first time, it was overwhelming. Adopt! Let love into your life!

As far as Marfan, it was just a fluke that we found out. Mark was being taken care of for the afternoon by a relative when we were visiting in-laws in upstate NY. She went for a power-walk every day with a neighbor who happened to be a pediatrician. "Want me to ask her anything?" she offered. "Sure," we replied, "ask her if she has any suggestions about his strengthening fingers since he's always picking up Cheerios with his knuckles." The friend mentioned Marfan. The relative told my in-laws about a week or two later. The in-laws told us a few weeks later. (They waited until they had learned a little bit about it, and we couldn't believe they waited!!! "It's our child! Let us determine if it is important!") We checked the web, and then checked off item after item on the 'Do you have Marfan?' check lists. Yes, double jointed. Yes, long fingers and toes. Yes, big floppy ears. Yes, taller than average. We called our pediatrician immediately and he told us not to worry. "He doesn't have Marfan." We were ready to take it further when about a week or two later he called us back and told gave us the names of a cardiologist, geneticist and ophthalmologist at Childrens Hospital he wanted us to see right away. Nothing like a doctor who does his homework and isn't afraid to change his mind!

So, now we know what we're dealing with and although we get a little overly concerned at times and tend to over-react (we visited the ER last weekend when we really didn't have to), it's all about taking the best care of our beautiful boy. We'll continue to over-react and in great part thanks to a wonderful list serve, are just about as educated on Marfan as we can be. I find that the more educated you are, the more careful you are, hence the occasional over-reaction! But as all of our wonderful doctors know, we would rather be safe than sorry.

Inez