Stories about: Omegaven

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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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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Miles to go: From Mississippi to Boston for life-saving care

ileal atresia

Whether he’s riding with his family on their all-terrain vehicle (ATV) at home in Mississippi, learning how to fish or playing with his cousins, Ethan Claborn is happiest when he’s outdoors. Simple things like a blade of grass or drop of rain are even more special for this almost four-year-old, considering he spent the first year of his life within hospital walls.

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FDA regulations make medical innovation a waiting game

Medical research is not a field for people who like instant gratification. There are long waits as cultures grow, proteins crystallize and cells divide. And when a discovery finally becomes something tangible, like a medication, it can still take years of testing and government approvals before a patient can benefit from it.

But what happens when a life is at stake and time is a luxury the patient simply cannot afford?

That is the question asked by NBC News’ Rock Center in a recent piece they did on Boston Children’s Hospital surgeon, Mark Puder, MD, PhD. Puder has help develop a potentially life saving drug called Omegaven, which he’s been using to help reverse fatal liver disease in infants. However, despite the drug’s effectiveness in Puder’s patients, the Food and Drug Administration has yet to approve its use nationwide.

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