The doctors told me it wouldn't happen again -- that it was highly unlikely. I trusted them because I wanted to believe it to be true. Yet it did happen again. A year and a half after my first son died, I lost my second son to cardiomyopathy, a rare and incurable heart disease.
My first child, Bryan, was only 11 months old when he died suddenly from an undiagnosed case of cardiomyopathy. His heart had been failing without any signs of distress. The next year, our second child, Kevin, was born and we received the devastating news that he, too, had cardiomyopathy.
We did everything we could to save him, but in the end he slipped away from us as he waited for a heart transplant. He was only 9 months old when he died and had had spent the last three months of his life in and out of the hospital. What happened to my two boys highlight the seriousness of pediatric cardiomyopathy. Nearly 40 percent of children diagnosed with cardiomyopathy receive a heart transplant or die. It is also the leading cause for sudden cardiac arrest in the young.
After nearly three years of trying to start a family, my husband Eddie and I were alone without children. We were devastated and left with so many questions: How could the lives of our two beautiful children be cut short by a heart disease that so few know about? Why had cardiomyopathy cursed our family twice?
We began our desperate search for answers. We pored over medical journals, sought the advice of specialists, enrolled in research studies and underwent extensive genetic testing, only to have the results come back negative or inconclusive.
For months, I felt confused and defeated. My faith in God was shaken, and I was angry at the unfair hand we were dealt. At my most vulnerable times, I screamed, "What kind of test is this and why us?" Other times, I quietly wondered, "Could there be a bigger plan for reasons that we can't understand now?"
My husband and I knew we had to do something so that other families would not have to endure what we experienced. We established the Children's Cardiomyopathy Foundation (CCF) in 2002 to help other families come together and find answers. What began as a way to honor our two boys grew over time into something much larger. As I listened to the sad stories of parents who lost multiple children to the disease, or the anxious parent of a newly diagnosed child, or the agonized mother praying for a donor heart for her child, we realized that we were in a unique position to turn despair into hope for these families. CCF's mission became my life's purpose -- to represent and advocate for the needs of families affected by cardiomyopathy.
This year marks a new decade for CCF, and we celebrate National Heart Month in February with the thousands of families and physicians that have joined our cause. We are proud that we have played a part in improving the quality of life of children with cardiomyopathy. When CCF started, little research was being done and patient outcomes were dismal. As of now, $1.8 million has been committed to research and treatment initiatives, leading to more than 100 medical publications on pediatric cardiomyopathy that guide physicians in their diagnosis and treatment. CCF-funded scientific conferences, bio-specimen repository, treatment centers, and multi-center research collaborations also have helped to advance medical knowledge and improve care.
We know that not all children with cardiomyopathy are being diagnosed in time, as was the case with my son Bryan. It's been said that for every child that is diagnosed, there is another child unknowingly at risk of sudden cardiac death. That is why I support the Cardiomyopathy Health, Education, Awareness, Risk Assessment and Training in the Schools (HEARTS) Act, which was introduced under CCF's leadership to the U.S. House and Senate. This bill will increase awareness of cardiomyopathy and the risk of sudden cardiac arrest among parents, schools and health professionals. Our hope is for those at-risk to get properly diagnosed and treated.
It is still painful to think about what Bryan and Kevin went through, but I realize now that my loss and subsequent grieving lead me to a more purposeful life. As I look back, I see that life does not always progress in a linear way -- the road can twist and turn and you may end up on an entirely different path than the one you would have chosen. My husband and I did realize our dream of having a family. We have four wonderful, heart-healthy children now -- two adopted and two biological.
As the founding executive director of CCF, I continue to be inspired every day by children living with cardiomyopathy and the stories their families share with me. Their strength and courage motivate me to continue on this journey to develop better treatments and eventually cures. You can visit CCF's website to learn more about cardiomyopathy and the work we are doing. With more public support, we can accelerate our progress and ensure that fewer young lives are lost to cardiomyopathy. No parent should ever have to deal with the heart-breaking loss of a child.
For more information on CCF, please visit here.
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