Chances are, you never met Kevin Cookson.

Chances are, if you had you would have loved him.

An avid outdoorsman, Kevin devoted much of his life to teaching others to enjoy nature. He worked as a whitewater raft guide and a ski instructor--skiing was always his first love--and when I met him, he was living in a tent on the beach in Costa Rica. Like so many others, I soon came to love him--and like so many others I’m still reeling from his loss.

When he died last year from complications of Marfan Syndrome, he was only 35. Many, many people--people who would have come to love him as I did, people who would have learned from him--never got a chance to meet him. That might have been different if more was known about Marfan Syndrome--and if medical professionals were better prepared to diagnose it.

Kevin had no family history of Marfan Syndrome. He did not know he had the disease until he was 29 years old and suffered an aortic dissection. Kevin went to an emergency room clinic several times with severe chest pain and an abnormal EKG. The doctors, unprepared to recognize Marfan, sent him home twice that night. It was only when Kevin had a TIA (transient ischemic attack) and found himself unable to talk that they sent him to a bigger hospital for evaluation. There doctors once again misdiagnosed him--none of them even mentioned Marfan Syndrome, though Kevin had many of the most classic characteristics. As a result of his undiagnosed aortic dissection, Kevin suffered a massive stroke. Not until he was flown to yet another hospital to have his aorta repaired did a doctor finally diagnose him correctly. Three or more doctors--doctors trained in emergency medicine--did not know enough about Marfan Syndrome to understand what was happening to him. As a result, Kevin’s life would never be the same again.

Kevin had successful surgery to repair his aorta in January 2001. He needed a pacemaker along with a new aortic valve and a graft to replace damaged tissue. Yet the devastating effects of his stroke prior to his surgery would become his biggest challenge. The doctors told me he would never walk, talk, or take care of himself again. But after four weeks in an inpatient rehabilitation facility and years of outpatient rehab, Kevin proved them wrong. He still had no functional use of his right arm, he could no longer read or write, and he could no longer speak in sentences. He had difficulty understanding some things and difficulty communicating with people who didn't know him. But even if he would never ski again, Kevin could walk without the help of any devices, and he could accomplish most daily activities with his left arm. Eventually he found himself living independently once again. Through it all, he managed to find joy in every waking moment--and to bring joy to every individual fortunate enough to cross his path.

In December of 2006, Kevin again dissected his aorta. Despite the diagnosis of Marfan Syndrome, doctors once again failed to diagnose the dissection immediately--or even to suspect that he was having another dissection. It took several days and many tests to confirm what I already knew: his aorta had again torn. He underwent surgery to repair the damage on January 8, 2007. He told me goodbye and rolled into the operating room promising to "fight, fight, fight." I never talked to him again. Kevin Cookson died, still fighting, in the early morning of January 9 after more than fourteen hours of surgery. Not a day goes by that I don’t feel the devastation of his loss.

Kevin wanted everyone to know about Marfan Syndrome. More than anything else he wanted to make sure that others didn’t have to suffer as he had. He loved to tell people his story in hopes of educating others. And that’s why we’re sponsoring a cross country ski and snowshoe day on February 9, 2008 to honor him and to continue his dream of educating the public about Marfan Syndrome.

As you hit the slopes this year, I hope you’ll think of Kevin. I know I will. And I know that somewhere he’ll be looking down upon us and feeling once again the sensations he lost when he was 29 years old--the swoosh of snow beneath his skis, the bite of wind against his face.

Kevin Cookson died when he was 35 years old.

But if we work together, his dream of a day when no one will die of Marfan Syndrome will live on.