Posted at 12:00 AM
From Teri

Marfan syndrome has had a profound affect on me. To know that there was something wrong with the most important thing in my life was one of the most devastating things that ever happened to me. At a very young age 20, this marvelous miracle of birth happened. But something was definitely not what it should be. Nothing that I could put my finger on - but something was for sure up. For the next fourteen years it was a torturous battle to try and find out what was wrong with my child. Sitting in his hospital room hearing him scream at the top of his lungs “Mommy I need you” as they had him tied up in a papoose type apparatus, doing a bone marrow, missing the first time and having to do it the second time. He was three years old at the time. Fifteen hospitalizations and five surgeries he had already been through. BUT no one could tell me what was wrong.

When he was eighteen months old I was told that I needed to see a psychiatrist because I was trying to tell the pediatrician that his iris wiggled (a sign of dislocated lenses). Eventually someone finally listened. That started the long and arduous trek to discover what I already as a mother knew. Derek did indeed have Marfan syndrome. My first exposure to Marfan syndrome was to read that the life expectancy was twelve years. God, the light went out in my heart.

Along the way we have met many wonderful, beautiful Marf’s. These people are so special. One of those persons was Scott Kiefer.

Scott was 32 years young when I met him. Always full of life, energy, and fun! Even though he had been through so much, he still kept his sense of humor. The second hardest thing I have ever had to do was sit in the waiting room at the hospital for Scott’s third major surgery knowing in my heart that Scott would probably not make it out of the operating room.

My last words to Scott that morning before his surgery were “See you on the other side” meaning to me when he woke up. But when Scott repeated those words back to me I knew that, that was not his meaning.

Scott will be forever in our hearts. He will be that angel that taps us on the shoulder and reminds us to smile. Don’t be so serious. It’s just life.

The first time we learned about Scott and his family was in an article in the Des Moines Register about his surgery in 1989 and how he had prevailed and lived despite his aorta actually rupturing. That is also the time that his family found out that his dad, both his siblings and a niece and nephew also had Marfan Syndrome.

Scott helped us to accept Marfan Syndrome with his humor, his love, his optimism, his intensity and his ability to see things from a very different perspective. He taught us to have tolerance for life, to not be so damned judgmental, to laugh at life instead of frown and most of all love your family. They are the most important things on this earth. Smell the roses along the way. He shoed us it is OK to be scared and share that with others – to draw from their strength when ours is not so great; and there is nothing wrong with being different and actually should be the desired. Scott taught us to fight with every fiber of our being and not to give up. There is always hope even at the bleakest moment.

Scott we still miss you and love you very much.

Derek, my son, reminds me so much of Scott. There is about a generation between them in age but there is a tremendous amount of likeness in their personalities and the “Marf” physical traits. Both men’s talents were never appreciated until much later in their lives.

Marfan syndrome has made Derek and me much different persons than we might have been. For me, I became a lot more vocal and this allowed me to let Derek grow into his own person.

Marfan Syndrome has come along way in the years I have been associated but we still have such a long way to go so we do not continue to lose our Marfan community.