Stories about: Our Patients’ Stories

Stories from the transplant journey

Erin, a heart recipient, kisses her fiance
PHOTO COURTESY OF ERIN

On April 11, transplant recipients and their families gathered at Boston Children’s Hospital to speak about their transplant journeys during a special nursing grand rounds. As Donate Life Month draws to a close, we share excerpts from their stories, made possible #becauseofadonor.

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Support for midaortic syndrome: Christopher’s story

boy with midaortic syndrome
PHOTOS: COURTESY OF THE HUGHES FAMILY.

Lori Hughes wants people to know about midaortic syndrome. She talks to friends, family and teachers, and even runs a private Facebook group called MAS Kids for families dealing with this rare condition. “I remember how I felt 10 years ago,” she says. “It’s good for parents to be able to share their stories and connect with each other.”

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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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From frustration to freedom: My journey with hemophilia A

Donovan Guerrero is thriving with hemophilia thanks to a clinical trial

I was diagnosed with hemophilia A at 4 days old. My parents had no idea what it was, but they discovered that my mom was a carrier. They brought me to the Boston Hemophilia Center. It helped them to learn about hemophilia together with other families going through the same thing.

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