Archive for bach
Knowing what life is worth: I am an adult heart patient and much more
Most of the children showed off a favorite toy. Some brought items that were meaningful to their family or culture. When I got to the front of my kindergarten class, my hands were empty. “My show-and-tell is…me,” I exclaimed as I pulled up my shirt and bared my chest to an audience of shocked five-year-olds ... Read More about Knowing what life is worth: I am an adult heart patient and much more
A lifetime of treatment inspires Ruth to advocate care for others
Ruth Ngwaro offers guidance to children who have heart disease. Perhaps her most useful bit of advice is telling them to not look too far ahead in their lifelong journeys and instead focus on what they can do each day. She would know: Throughout childhood and well into adulthood, Ruth was in and out of ... Read More about A lifetime of treatment inspires Ruth to advocate care for others
Letters from the heart: “Life will be better”
Children with congenital heart disease (CHD) have much to think about as they undergo tests, try medications, and face possible surgery. These adults know what that’s like. To celebrate National Heart Month, here are their words of encouragement. Frank Collins, 63 I loved basketball as a kid, but when I played I would get tired ... Read More about Letters from the heart: “Life will be better”
Appreciating the small things: A New York family’s journey with CHD
The Harris family of Monroe, New York, are no strangers to congenital heart disease (CHD). Eighteen-year-old Jack Jr. grew up living with CHD, but had always been active. His father, Jack Sr., had also lived an active adulthood, completely unaware of his future CHD diagnosis. When they each found themselves in need of heart surgery, ... Read More about Appreciating the small things: A New York family’s journey with CHD
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 about BACH Program: Heart care for patients of all ages
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 about After beating the odds, Joey dreams of Hollywood
My continuing heart journey with Boston Children’s
My connection to Boston Children’s Hospital started on a bright and sunny June day in 1979. My parents, who were excitedly anticipating what they assumed would be the uncomplicated birth of their first child, got an unexpected surprise when I was born completely blue (like a Smurf) and had to be rushed to Boston Children’s. ... Read More about My continuing heart journey with Boston Children’s
Expanding on a lifetime of heart care: The BACH Program
As more patients born with congenital heart disease (CHD) live well into adulthood and older age, there is an increasing demand for clinicians who understand their complex and unique needs. Since its inception more than 25 years ago, the Boston Adult Congenital Heart (BACH) Program has been a leader in adult congenital heart disease (ACHD) ... Read More about Expanding on a lifetime of heart care: The BACH Program