Raising Awareness: Cardiomyopathy Afflicts Young Essex Girl

Nine-year-old Anna Torok of West Caldwell has a heart disease called dilated cardiomyopathy. While most people haven’t heard of cardiomyopathy, one in 100,000 children will be diagnosed with it.

And for every child not diagnosed, there is another child affected by the disease. Many of them will be fine. Some will suffer cardiac arrest at school or on a playing field. Others will need a heart transplant to survive.

Anna is one of the luckier children with cardiomyopathy. Although her initial diagnosis expected that she would need a heart transplant by the age of three, she has defied the odds and continues to thrive on a regimen of heart medication. 

The Children’s Cardiomyopathy Foundation (CCF), based in Tenafly, was founded by a couple who lost two young sons to the disease. Their goal is to find a cure, to save lives, and to improve the quality of life for every child diagnosed with cardiomyopathy.

They fund research at the National Institutes of Health and other major medical centers, are working to pass the first-ever cardiomyopathy bill in the state legislature, and operate support groups serving families around the world.

CCF has made incredible strides in the 10 years they’ve been in existence, but there’s still a long way to go. There is still no cure for cardiomyopathy.

The Torok family is holding a benefit for the Children’s Cardiomyopathy Foundation at the Caldwell Women’s Club on Sunday, October 14, from 4 p.m. to 7 p.m.

The cost is $45 per person. Food and beverages will be served, and there will be an amazing tricky tray auction including gift certificates for local shops and services, major league sports tickets, and much more.

The Cake Boss, one of Anna's idols, is making the cake for the evening and perhaps a special appearance.  Says Anna’s mom Danielle, “Our own experience, along with those of other affected families, highlight the critical need to find a cure for this disease. We hope that you will join us in this very important fight.”

DETAILS:

Hearts of Hope Benefit for Pediatric Cardiomyopathy

Women’s Club of Caldwell

31 Westville Avenue

Caldwell, New Jersey, 07006

Sunday, October 14, 4 p.m. to 7 p.m.

$45 per person donation