Anne Marie

Patient Story

Anne Marie’s Story: Journey to Chicago During a Pandemic

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Anne Marie is a typical 5-year-old girl; she’s in constant motion, very spunky, very feisty and very strong-willed. She has also faced more health challenges in five years than most of us do in a lifetime. Anne Marie was born two months early and, as an infant, lived with heart defects, hypertension, kidney trouble and bleeding in her brain. As she grew, her health remained fragile; a seemingly common cold could turn into a hospital stay.

Despite being surrounded by a team of doctors and specialists — and her parents’ relentless pursuit to find a diagnosis and the best care for their daughter — Anne Marie’s health continued to decline.

Her devoted parents, Catherine and Louis, always hoped and believed that Anne Marie’s health would rebound so that she could thrive like any other child. Finally, a gastrointestinal specialist diagnosed Anne Marie with a rare condition in which the liver is missing a portal vein. The consequences of this one missing vein caused her countless health issues.

Due to the rarity of her condition, few specialists in the world had the ability to treat her, one based in Chicago. Anne Marie’s family traveled across the country from Alabama to Chicago — in the middle of a global pandemic — so she could undergo two surgeries. After a long hospitalization, Anne Marie came to Shirley Ryan AbilityLab, where she relearned how to sit up on her own, stand, walk and regain so many simple functions.

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After a month at Shirley Ryan AbilityLab, Anne Marie is not only recovering balance and coordination, she’s also walking, running, jumping, climbing up and down stairs, getting dressed by herself, playing catch and improving her ability to tolerate foods.

Anne Marie’s future is bright and full of hope, thanks to her innate spark, resiliency, supportive family and her team at Shirley Ryan AbilityLab.

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