Defying The Odds

July 11, 2022

Amy Breen Greig Cephalopolysyndactyly Syndrome
Amy never thought she’d have children. From her first ultrasound she learned her daughter would have extra fingers and toes, enlarged ventricles in her brain, and that she may never walk or talk. Amy said, “this was my miracle child. I chose to keep her, knowing that I’d have to figure everything out along the way.”

When Jordynn was born, she took her to Dr. Catherine Nowak, a geneticist at The Genesis Foundation’s Feingold Center for Children. Amy learned that she and her daughter had the rare disease of Greig Cephalopolysyndactyly Syndrome. “After 22 years of not knowing what was wrong with me, I was relieved to discover why I was different from everyone else.” Now age 11, Jordynn has had 36 surgeries, and may need more throughout her life. Amy remembers when the doctor told her that her child would never walk or talk. Amy laughingly says, “if they could see Jordynn now, she doesn’t stop talking and has become so sassy.”

Author: Tori Stuart

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