Archive for Archives
BACH Program: Heart care for patients of all ages
At 73, Fran Sansalone might not seem like a typical Boston Children’s Hospital patient. But she’s one of a growing number of adults who visit the Heart Center regularly. Fran has been a patient in the Boston Adult Congenital Heart (BACH) Program for the past 18 years. Like other adults born with a congenital heart ... Read More
Mary’s journey with genetic epilepsy
Lots of people don’t like the heat. It makes them feel uncomfortable and sluggish. But for Mary, being outside on a hot day means risking a seizure. So can running in gym class or having a fever. That’s because Mary has genetic epilepsy, a form of Dravet syndrome — a rare epilepsy syndrome caused by ... Read More
Camp Journey and a horse named Evan build Luca’s confidence
Until this summer, 8-year-old Luca Castellano had never been on a horse. But after participating in Camp Journey, a therapeutic riding camp for kids with congenital heart conditions, he was riding and caring for a horse like a pro. “Luca pretty much fell in love with a horse named Evan,” says his mom, Rebecca. Camp ... Read More
Staff Spotlight: Meet Andrea Lerude
Andrea Lerude is a certified child life specialist on the inpatient neuroscience floor at Boston Children’s Hospital. She’s worked at Boston Children’s for more than five years. What does your job involve? As a child life specialist, I provide developmentally appropriate coping support to children in the hospital, in the form of play. Basically, I ... Read More
Violet is blossoming five years after Tessier cleft surgery
In October 2014, Violet and her parents traveled from their home in rural Oregon to Boston Children’s Hospital for a life-changing surgery. Violet, who was born with an extremely rare and serious craniofacial anomaly, called a Tessier cleft, needed an operation to close the gap in her facial bones. After nine hours in the surgical ... Read More
Amelia makes a special connection with her EEG tech
Amelia arrived at Boston Children’s Hospital in August with a present in her small hands. The gift was for one of Amelia’s favorite people at the hospital, electroencephalographic (EEG) technician Katie Tucker. Tucker has been Amelia’s primary EEG tech since she was just 7 months old. “We first traveled up to Boston Children’s from New ... Read More
After beating the odds, Joey dreams of Hollywood
Joey Manzo’s biggest dream is to travel to Hollywood to meet Ellen DeGeneres. Given how many dreams he’s already made a reality, it’s likely one day he’ll make that happen too. DiGeorge syndromeDiGeorge syndrome, also called 22q11.2 deletion syndrome, is a genetic condition caused by missing a part of chromosome 22. It can cause a ... Read More
Sofie’s story: A new gene therapy treatment for SMA
Sofie Petrovická sits up in the exam room, smiling and laughing with her physical therapist, Elizabeth Maczek. Though she’s just over a year old, sitting on her own is no minor feat for Sofie — in fact, it’s nothing short of a miracle. Sofie was just 3 months old when she was diagnosed with spinal ... Read More
Ellery’s story: The mystery of opsoclonus myoclonus syndrome
Ellery was a normally developing 2-year-old when her skills took a dramatic shift backwards last winter. “She started wobbling when she walked, like someone who had had a few beers,” says her mom, Maura. “Then she developed tremors in her hands, couldn’t put a spoon to her mouth and she stopped playing with any of ... Read More
Improving developmental care for infants in the Cardiac Intensive Care Unit
Infants born with congenital heart disease (CHD) are some of the most fragile patients, often requiring surgery or other interventions in the first few months after birth. They also face a higher risk of developmental delays, learning disabilities, and behavioral problems than children born with a healthy heart. To help mitigate these developmental challenges, a ... Read More