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The Genes We Can’t Avoid

© April Lee Schmidt

My daughter, mother and I share a genetic disorder called Marfan's syndrome. Marfan's is a genetic disorder of the connective tissues. It can affect the skeleton, lungs, eyes and most seriously it can affect the heart. I knew when I made the decision to have a child there was a 50% chance that the baby would inherit the gene that causes Marfan's. I chose to focus on the other 50%; besides Marfan's can affect individuals in varying degrees and in varying body systems. Hence, just over thirteen years ago I gave birth to my second child, Samantha. As she grew it became clear that she was definitely affected by this disorder.

Unfortunately, of all our family members with Marfan's, Samantha seems to be affected most. Each time I accompany her to a doctor and she is prescribed another form of treatment I feel a sense of remorse. When her scoliosis had progressed to the point that she needed a back brace she was devastated. We both cried all the way home. I wanted so much to be able to wear the brace for her and I told her so.

Like me, Samantha writes her way through all of life's challenges. After writing and sharing a very moving poem with her teacher it was suggested that she give a report on scoliosis. This gave her a chance to explain to her classmates why she had to wear a brace as well as being very therapeutic.

I told a friend who has Marfan's about my remorseful feelings. Her answer was, "I too have Marfan's, but I'm sure glad my mother chose to bring me into this world." This made me feel better, however my daughter's attitude and outlook on life has all but alleviated my remorse. Besides, I have Marfan's syndrome and I certainly don't hold my mother responsible; and if not having Mafan's syndrome means I never would have been born then my choice is Marfan's.

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