Stories about: Dr. Bram Raphael

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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The tube, the team and the family that give life

Parenteral-Nutrition-Naema-BostonAs 2-year-old Naema Alshehhi turns the pages of her favorite book, her eyes glimmer with curiosity. Sitting with her father, Àbdulla and big sister, Dana, in their temporary Boston apartment, the inquisitive toddler points to a number of shapes and is fascinated by the rainbow of color.

During this quiet moment, you see the gentle outline of Naema’s central line through her tiny shirt. The lifesaving tube — surgically inserted into her chest — provides the nourishment needed to manage the rare intestinal disorder she was born with, called microvillus inclusion disease (MVID). The condition, which causes severe diarrhea and an inability to absorb nutrients, requires specialized parenteral nutrition (PN) and intravenous hydration support at home.

For the Alshehhi family, however, “home” is over 6,600 miles from Boston.

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