Stories about: short bowel syndrome (SBS).

Reena’s story: A bright future with short bowel syndrome

Reena doesn't let short bowel syndrome define her.

She’s just 16, but Reena Zuckerman knows exactly what she wants to be doing in another 10 years. “My dream is to play on the press team in the annual Women’s Congressional Softball Game,” says the aspiring political journalist. Since 2009, the event has pitted members of Congress against the press corps, raising nearly a million dollars for charity. “When I’m not doing schoolwork or watching TV, I’m listening to political podcasts and NPR,” Reena confesses.

It’s an impressive goal, but one that’s no doubt attainable for this driven teen, who’s been pushing herself to defy expectations since she was a baby. Her accomplishments are all the more remarkable considering that she was born with a serious gastrointestinal condition.

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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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Making connections: Bonded by short bowel syndrome

care for short bowel syndrome

At the top of the dual slide, 4-year-old Brayden Austin is buzzing with energy, excited to go careening down to the bottom. Yet he waits patiently until a towheaded boy joins him on the neighboring chute. Two-year-old Camden Glover is a little nervous. But Brayden grabs his hand and the pair sails to the ground together, squealing with delight.

It’s a typical playground scene, but also an apt metaphor for the boys’ special connection. The two children — one from Maine, one from Tennessee — have a close friendship. But they might never have met if not for one life-threatening event.

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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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