Archive for heart patient
A complex repair for Ruby’s heart
When Rebecca and Michael Stewart learned their baby would be born with a congenital heart condition, they reacted as any expectant parents would, with shock and fear. But they quickly moved into action, focused on finding the best care for their daughter before her birth. “At about 22 weeks into my pregnancy, Ruby was diagnosed ... Read More about A complex repair for Ruby’s heart
Ava’s journey with arrhythmogenic cardiomyopathy
Claire Poole never thought a 10-year-old could have a heart condition. So when her daughter, Ava, slumped against the wall exhausted and complaining of arm pain one Sunday in 2012, Claire assumed she had overextended herself at a sleepover the previous night. “When we got into the car, Ava turned grey and had trouble breathing,” ... Read More about Ava’s journey with arrhythmogenic cardiomyopathy
Noah the brave: A cross-country quest for a biventricular repair
If you walked down Binney Street next to Boston Children’s hospital this fall, you might’ve noticed something a bit out of the ordinary. Parked on the sidewalk, just out of the way of passers-by, sat a large RV. On the back of the camper, a large photo of a smiling 5-year-old Noah Alderson told part ... Read More about Noah the brave: A cross-country quest for a biventricular repair
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
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 about Camp Journey and a horse named Evan build Luca’s confidence
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
A sign of Faith in one little girl’s single ventricle journey
Nicole and Charlie Parker were no strangers to adoption when they embarked on the journey to bring their daughter Faith home from Langfang, China — they had previously adopted two of their four children. What they were not familiar with was raising a child with a complex congenital heart condition. Faith was born with a ... Read More about A sign of Faith in one little girl’s single ventricle journey
A biventricular repair helps California girl thrive
Even before their daughter, Elyse, was born, Amanda and Ian Primavera knew their road would be a little rocky. But they had no idea how hard they’d have to push to get the care they wanted for their daughter. Ultimately, an online support group and a little perseverance helped them find the answers and treatment ... Read More about A biventricular repair helps California girl thrive
Regina’s journey with HLHS: Four years later
Regina was just 25 days old the first time she made the trip from her home in Mexico to Boston. Regina was born with a serious congenital heart defect called hypoplastic left heart syndrome (HLHS), resulting in the underdevelopment of the left side of her heart. Her doctors in Mexico told her parents it was ... Read More about Regina’s journey with HLHS: Four years later
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