Suzanne lives in Pennsylvania with her husband, Will, and their children, Caitlin and Tyler. Mom and son are both affected by ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome.
This tenacious educator grew up never knowing that her symptoms were actually a part of a genetic disorder. In this interview, Suzanne discusses growing up without a diagnosis, finding her spouse, and educating doctors and others on how to treat people.
She talks about how she and Will chose to raise Tyler and how that has impacted him now that he’s an adult. With her spunky attitude, Suzanne offers inspiring words to be confident, believe in yourself and get involved.
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One comment on “Suzanne’s Story with EEC Syndrome”
Oh Suzanne, this is excellent. So happy to call you a great friend.