A little about myself and my feelings about Marphan syndrome
August 17, 2016
Stephanie Lawson wrote -
Hi everyone! My amazing son is turning 10 in February. I asked him what he wanted for his birthday and he with out even a second thought said he wanted to raise money for Marfan syndrome. He suggested we do a walk and maybe a 50/50 raffle. He really got into planning, so soon u will see plans for a walk. And maybe we will have other events locally. I will update you all. His goal was $200.00 I said well baby lets do something to make that and maybe more. His eyes got so big. He shared his birth month with Marfan syndrome awareness month. Here is our story so you see why he is so passionate and giving. Brody was born February 8, 2006 10lbs 1 oz. he was a big baby. Over all he appeared healthy no real issues. When he was 17months his brother Rylan came along also a big baby and also appeared healthy. October 2008 we had an emergency. Brody was sick. I took him in he tested negative for strep throat. Yet his symptoms appeared that way. The doc treated him for strep. He just got worst. I kept calling the doc when finally the doc said go to Children's hospital right away. His symptoms were that of Kawasaki's disease. They began testing and treating him. I was scared. Brody's heart indicated his aortic root was larger then normal and his Mitral valve was flat. For several years we danced around Marfans and other connective tissue disorders. But due to the medical system not covering DNA testing we waited. Then my little sister passed away she was 33 . They asked if she had Marfans and we did not have an answer. I brought this information to the doctors attention. He said we need to have Rylan's and my heart checked too. We scheduled but ended up having an emergency for Rylan's eyes and they checked Rylan sooner and rushed to get his DNA testing. And started him on heart medication due to the findings. He was POSITIVE for the the mutation of the FBN1 causing Marfan syndrome. Testing started on the rest of us. We are a family of Marfans. How it has affected us: eyes issues, leg pain, foot pain, migraines, nerve pain, headaches, bone issues, skin, lungs, neuro psych (both boys) and let's not forget our hearts. The connective tissue holds all the body's cells, organs and tissues together. Our family believes in giving back. We are Cub Scout family. We don't let our diagnoses stop us from enjoy our every day. We ask you to help Brody's birthday wish.