We All Know A Chair

July 11, 2022

Tori Stuart Greig Cephalopolysyndactyly Syndrome
We all know a chair where we get good news and bad. My first encounter was with my baby at The Genesis Foundation’s Feingold Center for Children. That chair catapulted me into a foreign world without a map.

The world of Rare Disease did not welcome me with a hot towel and a tropical drink. Instead, the greeting was a name that’s difficult to pronounce and harder to spell: Greig Cephalopolysyndactyly Syndrome. Greig affects the development of the limbs, head, and face. I would have settled for a dirty towel.

I too have been diagnosed with Greig. Dr. Catherine Nowak at The Genesis Foundation for Children taught me to find the strength to learn as much as possible to provide Jordynn with the support she needs to thrive. I now have the courage and voice to speak up, and to teach every physician, therapist, and teacher how they can better help us. I am forever thankful to Dr. Nowak and The Genesis Foundation for Children.

Author: Amy Breen

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