Stories about: short bowel syndrome (SBS).

Worth the fight: Finding care for short bowel syndrome

smiling baby with short bowel syndrome
PHOTOS: MICHAEL GODERRE/BOSTON CHILDREN’S HOSPITAL

When Hannah Lillie meets someone new, she’s likely to smile and blow them a big kiss. The friendly, wide-eyed toddler loves being the center of attention — but when she was just 3 weeks old, she and her parents, Layne and Ryan, found themselves in the middle of a medical whirlwind they could never have expected. When she suddenly began vomiting and turning blue during a routine feeding, her parents rushed to their local emergency department.

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Living his best life: Caring for Christian

little boy with short bowel syndrome wearing a fedora
PHOTOS: MICHAEL GODERRE/BOSTON CHILDREN’S HOSPITAL

Christian Jaspersen was wet, muddy — and having the time of his life. After an ATV ride around his family’s rural Oklahoma farm with their grandfather, he and his two older brothers plopped themselves into a nearby mud puddle, playing with toy trucks and getting wonderfully messy. “For a while, we didn’t know if Christian would be able to have a ‘normal’ childhood,” says his mother, Rachel. “Having these experiences now is just so special.”

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‘Not to be stopped’: Dorothy’s story

recovery from short bowel

Dorothy Hardy “doesn’t walk, she dances,” says her mom, Carrie. “She just waltzes around the house, singing songs she makes up. She’s not to be stopped.” In fact, when the little girl injured her leg at the playground, she taught herself to dance while wearing a cast. It’s a resilient, determined attitude that Dorothy — now two-and-a-half years old — has had since she was diagnosed with jejunal atresia as a newborn.

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26.2 for three: A transplant nurse’s tribute to her patients

pediatric transplant
Desh and Lucas

Heartbreak Hill: It’s the notorious Boston Marathon landmark that runners both anticipate and dread. But when Deshanthi “Desh” Perera approaches that challenging climb on April 16, she’ll have special motivation propelling her uphill. Perera, a nurse working on the organ transplant inpatient unit of the Pediatric Transplant Center at Boston Children’s Hospital and first-time marathoner, isn’t just running for the glory of a personal best time or the satisfaction of completing the race. She’s running for all of the remarkable patients at Boston Children’s, including three of her own.

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