When one thinks of heart disease, adults usually come to mind. The reality, though, is children can have heart disease too, often with more serious outcomes. I know because I lost my two sons to cardiomyopathy—a chronic and potentially life-threatening heart disease that affects the heart’s ability to pump and can lead, in severe cases, to heart failure or sudden death.
My first child, Bryan, was only 11 months old when he died suddenly from an undiagnosed case of cardiomyopathy. Bryan’s heart was failing without any signs of distress. The next year, our second child, Kevin, was born, and we learned that he too had cardiomyopathy. We did everything we could to save him, but sadly he died waiting for a heart transplant.
Pediatric cardiomyopathy has no cure. According to the Pediatric Cardiomyopathy Registry, nearly 40 percent of diagnosed children either receive a heart transplant or die. Losing my boys at such a young age was devastating, and I knew I had to do something to prevent other parents from experiencing the same heartache. In 2002, my husband and I formed the Children’s Cardiomyopathy Foundation (CCF) to fund research and to provide support services to diagnosed families.
Since CCF’s formation 13 years ago, the foundation has grown into a global community of families, physicians, and scientists, all working toward a common goal. On September 27, families from across the US will “Walk for a Cure” during Children’s Cardiomyopathy Awareness Month to raise awareness and to give hope to diagnosed children.
Cardiomyopathy is the number-one cause of sudden cardiac arrest in children under 18. According to the Centers for Disease Control and Prevention, approximately 2,000 people younger than 25 die of sudden cardiac arrest in the US each year. In many cases, sudden death can be prevented if a serious heart condition like cardiomyopathy is detected earlier and managed properly.
From research, we know that, in the majority of cases, cardiomyopathy runs in the affected patient’s family. In a CCF-funded study, “Genes and modifiers in pediatric cardiomyopathy,” Stephanie Ware, MD, PhD, found genetic causes for more than 60 percent of affected children, yet a recent CCF survey found that 53 percent of parents with a diagnosed child were not aware of their family’s cardiac health history prior to diagnosis. Several families that took part in the survey discovered through genetic testing that a parent or sibling also has cardiomyopathy.
Educating the public on the signs, symptoms, and risk factors of cardiomyopathy is critical to saving lives. In September 2014, we launched the Children’s Cardiomyopathy Awareness Month to call attention to pediatric cardiomyopathy and help identify more at-risk individuals so that they can get the appropriate care.
We are excited to add Walk for a Cure to our awareness month activities this year. The walk will be held on September 27 in West Orange, New Jersey, and will unite cardiomyopathy families across the US with a community that cares about them.
For more information on pediatric cardiomyopathy and Children’s Cardiomyopathy Awareness Month, visit the Children’s Cardiomyopathy Foundation website at www.childrenscardiomyopathy.org, or call 866-808-CURE (2873).