This blog post was written by Lisa Yue, Children’s Cardioymyopathy Foundation’s Founding Executive Director.
When one thinks of heart disease, adults usually come to mind. The reality 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 pumping function and in severe cases can lead to heart failure or sudden death.
My first child, Bryan, was only 11 months old when he died suddenly from undiagnosed cardiomyopathy. Bryan’s heart had been failing without any signs of distress. The next year, our second child, Kevin, was born and we received the news that he also had cardiomyopathy. We did everything we could to save him from the same fate as his brother, but sadly he died waiting for a heart transplant at 9 months old.
Losing my two boys at such a young age was devastating, and I knew I had to do something to prevent this disease from taking another child. In 2002, my husband and I established the Children’s Cardiomyopathy Foundation (CCF) to accelerate the search for cures and to provide support to diagnosed families.
Thirteen years later, CCF has grown into a global community of families, scientists and physicians all working together toward common goals. On September 27, during Children’s Cardiomyopathy Awareness Month, families and friends from across the U.S. will unite for CCF’s “Walk for a Cure” to raise awareness of pediatric cardiomyopathy and give hope to children battling this heart disease.
Children like Hana, Sara and Jacob are the reason that CCF exists, and their stories inspire us to work harder everyday. Hana, Sara and Jacob’s lives changed forever after their diagnosis. When Hana was only a few months old, she had a mild, but persistent cough that, 24-hours later, turned into an emergency three-week hospital stay. Sara had an implantable cardioverter defibrillator (ICD) inserted at 8 years old and can no longer play on a school athletic team. Jacob suffered a stroke and is now listed for a heart transplant.
Pediatric cardiomyopathy is a serious heart condition with no cure, and according to the Pediatric Cardiomyopathy Registry, nearly 40 percent of diagnosed children receive a heart transplant or die. It is also the number one cause of sudden cardiac arrest (SCA) in children under 18. Children’s Cardiomyopathy Awareness Month aims to change these statistics by educating the public on the signs, symptoms and risk factors of cardiomyopathy.
Sudden death can be prevented if cardiomyopathy is diagnosed early and appropriately managed. While my husband and I cannot bring back Bryan and Kevin, we will continue to do all we can for children living with this disease. An awareness month dedicated to our cause can help identify more at-risk children and save lives.
During Children’s Cardiomyopathy Awareness Month, Team CCF will walk alongside families and supporters at our Walk for a Cure on September 27 at the South Mountain Recreation Complex in West Orange, N.J. We will walk in support of children like Hana, Sara and Jacob because no child with cardiomyopathy or their family should walk alone on this journey.
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).
