Welcome to our CaringBridge site. We've created it to keep friends and family updated. We appreciate your support and words of hope and encouragement during this time when it matters most.
Our family's journey with Marfan syndrome began when Collin was officially diagnosed at 9 weeks of age. Kipp and I had never heard of Marfan syndrome before, so it's been a lot of learning along the way. Marfan syndrome is a connective tissue disorder, and connective tissue is basically the glue that holds the body together. Being it is a syndrome, every person affected by Marfan is different in how they are affected. Collin's case, at this point, is mostly with his skeletal system and cardio system. He has minor eye issues as well. Collin has been on meds for his heart, since discovering that his aortic root was starting to dilate when he was six weeks old. We have been following up with his cardiologist every three months for the past four years, and had always been reminded that by the time Collin was five, he will have most likely had a heart surgery. So, when Collin turned four in December, 2015, it hit hard- reminding us that in the next year, its possible we would be considering surgery. In February 2016, we saw his cardiologist, and she informed us its time to start thinking about it. We had a ct scan done beginning of March, and the Thursday before Easter we got the call saying its time to schedule. The two main factors in determining that it was time were: 1.) His aortic root had grown to 46 millimeters- they start thinking about replacing them when they hit 45, and 2.) His aortic root had grown 5 millimeters in a year- once it starts growing this much in a year span of time, it tells the cardiologist that it is probly just gonna keep growing, even with meds. So, Tuesday, March 29th I scheduled his surgery for Monday, April 11th- less then two weeks to prepare!!