Stories about: total parenteral nutrition

‘Not to be stopped’: Dorothy’s story

recovery from short bowel

Dorothy Hardy “doesn’t walk, she dances,” says her mom, Carrie. “She just waltzes around the house, singing songs she makes up. She’s not to be stopped.” In fact, when the little girl injured her leg at the playground, she taught herself to dance while wearing a cast. It’s a resilient, determined attitude that Dorothy — now two-and-a-half years old — has had since she was diagnosed with jejunal atresia as a newborn.

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Fighting for the next family: Mom’s experience inspires nutrition support guidelines

Michelle fought to ensure that her twins receive the nutrition support they need at school for short bowel syndrome.

As Michelle Marti watched her twin sons, Nicholas and Max, run around the playground, she worried. To a stranger — like the representative of their local school’s Planning and Placement Team (PPT), there to evaluate the boys’ eligibility for special needs services in kindergarten — they looked like any other kids having fun. But their playfulness masked a serious illness: short bowel syndrome, the result of a condition called Hirschsprung’s disease. “They look healthy on the outside because all of their medical differences are under their clothes,” admits Michelle.

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‘An easy decision’: Finding care for short bowel syndrome

care for short bowel syndrome

Allie DeRienzo loves to dance, sing and play with her big brother, switching from the pink-and-purple cartoon world of Shimmer and Shine to the action-packed fantasy of Star Wars with the blink of an eye. It’s a flexibility that has served her well: In just a few years, she’s endured more ups and downs than most 3-year-olds.

Although her pregnancy was normal, it became clear as soon as Allie was born that something wasn’t right. “She was incredibly distended and was transferred almost immediately to a high-level neonatal intensive care unit (NICU) in New York,” remembers her mother, Nanci.

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Miles to go: From Mississippi to Boston for life-saving care

ileal atresia

Whether he’s riding with his family on their all-terrain vehicle (ATV) at home in Mississippi, learning how to fish or playing with his cousins, Ethan Claborn is happiest when he’s outdoors. Simple things like a blade of grass or drop of rain are even more special for this almost four-year-old, considering he spent the first year of his life within hospital walls.

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