Patient Stories

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Contact the Cardiomyopathy Program

Every patient’s journey with cardiomyopathy is unique, but sharing their stories is a way to help each other with those challenges and experiences, which are universal. 

Read about these resilient and courageous children, teens and young adults, who are living with cardiomyopathy.

Danny Deitz Cardiomyopathy PatientHEART PROGRAM
High-school athlete battles heart failure
Danny became concerned about a mysterious decline in his health. Once second nature, football plays became strenuous, and he struggled breathing. Eventually, he felt weak just walking up stairs. He was in heart failure — and about to face the toughest summer of his life.

HEART PROGRAM
Heart transplant patient brings home the gold
In addition to winning gold for her softball throw, 10-year-old Alexia Clinton won silver in both swimming and long jump and bronze in cornhole. When you consider the fact that she had a heart transplant at the tender age of three, these accomplishments are all the more astonishing.

Brock and Connor Marvin

HEART PROGRAM
Sports and life lessons collide at World Transplant Games
Tough times never last, but tough people do. "This is what I told myself every single day that I battled severe dilated cardiomyopathy. And the phrase stayed with me for the months after my eventual heart transplant."

Brock and Connor Marvin

HEART PROGRAM
From the surgical suite to the winner’s podium
Brothers Brock and Connor Marvin have a lot in common. They’re both affable, active young men who love watching and playing sports.They were also both born with a genetic heart condition so severe it would require them to receive heart transplants within a year and a half of each other.

AidenVENTRICULAR ASSIST DEVICE (VAD) PROGRAM
Aidan: A VAD gives Aidan's family some independence
When Aidan was 8 months old, his parents learned he had hypertrophic cardiomyopathy, a rare but serious disease affecting the muscle of the heart. As his condition worsened, a VAD allowed him to finish the school year and enjoy summer at home while he waited for a new heart.

Boston Children’s is so much more than a hospital—it’s a community of researchers, clinicians, administrators, support staff, innovators, teachers, patients and families, all working together to make the impossible possible. ”
- Sandra L. Fenwick, President and CEO

Boston Children's Hospital
300 Longwood Avenue, Boston, MA 02115
For Patients: 617-355-6000
For Referring Providers: 844-BCH-PEDS | 844-224-7337

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