Stories about: Center for Advanced Intestinal Rehabilitation

Whatever it takes: Fighting for Michael

Michael doesn't let short bowel syndrome keep him from enjoying sports

Michael stood at the top of the hill, staring down at the glittering white snow. The prospect of skiing to the bottom was scary — on previous trips, he’d refused to try, worried that he would fall. But this time was different. He was ready to take a chance. Attempting to balance without using poles, he pushed himself forward and glided through the powder as his family cheered him on. By the end of the day, the 8-year-old had sailed down the slopes five times, all by himself.

The accomplishment was even more meaningful for his parents, Bill and Lisa Smith, who have watched him fight to survive — and thrive — since he was an infant. “He had some issues with spitting up and turning blue and was diagnosed with acid reflux when he was about a month old,” says Bill. “But we had suspicions that something else was wrong.”

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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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Advocating for Bridget: Coping with Hirschsprung’s disease

Hirschsprung's disease

On June 20, Bridget Landry celebrated a very special day with a hearty steak dinner. But it wasn’t her birthday. Instead, the 10-year-old and her family were marking the sixth anniversary of the day her ostomy bag was removed. As she enjoyed her meal, her parents, Carl and Laura, marveled at just how far their daughter had come. “For her first birthday, she couldn’t even take a bite of cake,” remembers Carl.

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