Friday, February 04, 2011

February is Marfan Awareness Month!

Marfan syndrome is a disorder of the connective tissue.  Connective tissue holds all parts of the body together and helps control how the body grows.  Because connective tissue is found throughout the body, Marfan syndrome features can occur in many different parts of the body. 

Marfan syndrome features are most often found in the heart, blood vessels, bones, joints, and eyes. Sometimes the lungs and skin are also affected.  Marfan syndrome does not affect intelligence. 
About 1 in 5,000 people have Marfan syndrome. This includes men and women of all races and ethnic groups. (taken from

Our son was diagnosed with Marfan Syndrome at birth. Marfan Syndrome is considered a progressive condition, and therefore we knew in our heads we most likely wouldn't get to spend as many years with Montie as we'd want.

But in our hearts we had to press on in faith & do whatever we could to make Montie's time here on earth as "normal" as possible.

Montie is missed so deeply...


  1. Thinking of you Denise. That's a great picture of Montie!

  2. We do miss Montie so much. A picture hangs in front of my desk of he and I working in my shop. The picture shows how intelligent he was as he is so attentive to the work he was doing with me. Montie was intelligent and humorous and fought bravely until Marfan finally took him. But now, he is heaven, waiting for all of us. Probably looking down and thinking--"If only they knew-that I am in paradise now-with no pain, no steel bars, seeing everything clearly and so much more." He is with love itself. Montie is with GOD. AMEN I can't wait to see him again in heaven.

  3. So sorry for your loss Denise and family! He looks so happy on the picture and i am sure he was loved! Hugs!!!