Marfan Syndrome Awareness 2/1/22

Robbie was on the webpage a few years ago.

February is Marfan Syndrome awareness month. Know the signs and save a life. You can find more information on this website.

We didn’t find out until Robbie was starting high school that he had Marfan Syndrome. He had a new doctor that was very smart and saw many of the signs on our first visit. He sent us to get his heart checked first and I was surprised to find out that he had problems with his heart. He went on preventative meds and couldn’t participate in PE or sports.

His aorta was enlarged, which can cause an aortic dissection if it gets too big. He also had problems with his valves. Some of his physical signs were an extra long arm span, super flexible, an indented chest, and a curved spin. It is very possible that having Marfan syndrome made it harder for him to fight off the cancer. Robbie had many obstacles in life, but he kept such an amazing spirit and didn’t let it get him down.

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