Stories about: Dr. Bram Raphael

Care for short bowel syndrome helps Ellie enjoy being a kid

treatment for short bowel syndrome at Boston Children's
Ellie and her dad, Gib

It’s a Thursday afternoon and Ellie Brogan is bubbling over with energy, greeting old friends and waving at others as they walk by. The 11-year-old, says her father, Gib, is “raring to go.” She’s a Girl Scout, plays viola and is in the cast of her school play, but today’s appointment is no typical afterschool activity. Instead, Ellie and her dad are paying their monthly visit to the Center for Advanced Intestinal Rehabilitation (CAIR) at Boston Children’s Hospital.

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Parent-to-parent: Tips for Home Parenteral Nutrition families

Toddler using parenteral nutrition smiles while making bird house

Four-year-old Thomas Onorato is a young zoologist at heart. Often seen with binoculars in hand, the adventurous preschooler is particularly drawn to bird watching. He enjoys talking about his feathery friends and studying their beauty and habitat.

Thomas’ love of animals runs so deep that he says he wants to be a veterinarian when he grows up. “Thomas is obsessed with animals. It’s his love,” says his mother, Melissa.

Beyond his quest to care for animals, Thomas has two other important missions — to manage the rare condition, microvillus inclusion disease (MVID) and receive the lifesaving parenteral nutrition (PN) support he needs to grow and thrive.

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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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