Stories about: short bowel syndrome (SBS).

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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Two life-threatening conditions.
One remarkable wish.

Lucas, who received a 5-organ (multivisceral) transplant looks over his mom's shoulderWhen Lucas St. Onge blew out the five candles on his birthday cake, he made just one wish. He didn’t ask for ninja turtles, a T-ball set or an Xbox — the only thing he wished was to be just like any other kid.

“It was a gift I couldn’t give,” says his mom, Heather.

On that same day, last May, he got his wish.

“He got a liver, stomach, pancreas, intestine and spleen — the five organs he needed to help him become healthy and happy,” Heather says.

Heather was 18 weeks pregnant when she and her husband, Anthony, learned they were about to face a myriad of medical challenges with their unborn child. To what extent remained unclear, until the day Lucas was born.

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