On Oct 27^th, 2004 we gave birth to our son Patrick Gaddie Jr. On Jan 19^th, 2005 my son passed away from SIDS: a condition with no known cause, no known genetic testing to diagnose, and no treatment that can prevent it from happening. It was heartbreaking for our entire family and left a hole in all of our hearts that can never be filled.

On Aug 27^th, 2007 we gave birth to my youngest daughter, Kendra. When she was two and a half years old I was travelling for work on a flight and I found a medical journal in the seat pocket on my plane. In that publication there was an article on Marfan syndrome. I had never heard of the disorder before, despite graduating from medical school. As I read the article I got a sinking feeling in my stomach that the clinical signs for this disorder matched my daughter. I just knew in my heart as her mother that I needed to address my concerns asap. As soon as I landed, I called my husband, told him my fears and implored him to make the first available appt. at the Mayo Clinic in Rochester, Minnesota for a screening for Marfan syndrome. Kendra’s genetic testing came back positive and that testing likely saved her very young life.

What is Marfan Syndrome? It is a genetic disorder that affects all of the connective tissue in the body. Connective tissue is the glue that holds everything together. People who have Marfan syndrome have very weak and fragile connective tissue. It affects the lungs, joints, eyes, skeletal system and the heart or cardiovascular system. It is a degenerative disorder with no cure. There is, however, medical intervention and treatments that with early intervention and diagnosis can save lives and allow these children – including my own – to live a normal lifespan. Without awareness of the clinical signs, diagnosis and treatment the disorder can lead to an early death. About half of people who have Marfan syndrome do not even know they have it. Sometimes when you hear of children collapsing and dying on a sports field it is due to undiagnosed Marfan syndrome. Raising awareness of Marfan syndrome has been a personal passion of mine. I may have not been able to prevent my son’s death, but if I can spare any parent the pain of losing a child due to undiagnosed Marfan syndrome I feel it is my personal calling to do so. You see, I believe that medical journal was left in the seat pocket for me to find and I am so very grateful it was there. If I had not found it I could have possibly have lost my daughter as well.

Michelle is the 50 year old mother of Kendra Gaddie.  Her family Patrick (spouse, also 50), Jessica (30 year old daughter), Bruce (14 year old son), and Kendra (12) currently resides in Oak Harbor, Washington. Her family has been actively fundraising and raising awareness for the Marfan Foundation for the past two years. Kendra was born with Marfan syndrome as the result of a spontaneous mutation. Michelle fund raises for the Marfan Foundation via her Color Street business, which you can look about from her Facebook group.