Life was beautiful for my husband Avi and I, and our five wonderful children. Then tragedy struck on April 15th last year, while our 11-year-old daughter, Danielle sat at a neighbor's kitchen table drawing a picture of two angels. She suddenly slumped to one side. You can see the trailing crayon mark on the angel's wing as her hand dropped from the table. Danielle had been startled by a car's horn and suffered cardiac arrest. 911 was called and the ambulance rushed her to Overlook Hospital, but all efforts to save her failed.

Danielle's death shocked us all. She was long and lean and the picture of health. She was always running, playing on the jungle gym, jumping on her pogo stick or swinging on the trapeze. Avi was sure she'd be a track star, but I pictured her as a ballet dancer.

She made people feel special and cared for, whether you were the new kid in class or the new Principal at school. She would be your friend if you were popular -- or if you were not.

Three days before Danielle died, my husband and I went to school for a parent/teacher conference. Danielle's teacher was about to retire after thirty years of teaching. She pushed Danielle's report card aside and said "Danielle's grades are good, but I don't care about that. I have to tell you that Danielle is the nicest kid I ever met.

She puts a smile on my face everyday no matter what mood I'm in, and she does that for every child in this classroom."

Danielle's death was a tragedy for all who knew her, but then we learned that approximately 3,000 children and young adults die from LQTS each year in the U.S. alone. Thousands more die from other undiagnosed cardiac disorders. Each of those families can speak about a child with many gifts and great potential, of broken hearts and endless tears. Every joyous occasion is marred by the sense of loss that never goes away.

What compounds this tragedy is that we never knew that Danielle had a problem - or she could have been treated and saved. Long QT Syndrome is a very treatable disorder, as are many other cardiac disorders that can cause sudden death. There is medication to protect those with LQTS, and internal defibrillators offer an added measure of protection. Unfortunately, these potentially fatal cardiac disorders can't be detected during a routine medical exam. However, Long QT and other cardiac disorders can be diagnosed on an EKG by a cardiologist. Unfortunately, in this country, children who appear to be healthy are not given EKGs.

Since Danielle's death we have learned that in Japan all children in grades 1, 7 and 10 are given EKGs.

In Italy, all high school athletes are required to have EKGs before participating in sports. Because recent research linked LQTS and SIDS, the Italian Ministry of Health has approved universal EKG screening for all newborns.

If baseline cardiograms were done in this country on all children at an early age we could potentially save the lives of the 3,000 American children and young adults who die of Long QT Syndrome every year, as well as the thousands more who die of other treatable cardiac disorders. Adults have periodic EKG's -- why not test children at an early age?

We have the technology to detect cardiac disorders and the medications and technology to treat them. We must now do a better job of determining who is at risk.

As a tribute to our daughter, we established The Danielle Brender Fund, Inc., whose purpose is to increase awareness of Long QT Syndrome, and contribute to scientific research by supporting C.A.R.E. It is our intent to promote the concept of universal EKG screening for all children, and to raise money for the purchase and donation of automatic external defibrillators (AEDs). Early defibrillation is the only effective treatment for a person in cardiac arrest, and we strongly believe that if Danielle were defibrillated within three or four minutes of her collapse, she would be alive today.

In Danielle's memory, and in the hope of saving other lives, we began a fund raising campaign to purchase AEDs for the public schools in Millburn-Short Hills. In November 2000, we distributed one-page flyers thoughout the community requesting donations, and the response was overwhelming. Enough money was raised to purchase ten defibrillators: one for each elementary school, two for the middle school and two for the high school. We were also able to provide training to over 200 teachers, administrators, and parents, free of charge.

Avi and I are now working with the Millburn/Short Hills Chapter of the Red Cross to sponsor a mass AED/CPR training session scheduled for September 30, 2001.

We also started a letter writing campaign to support New Jersey State Assembly Bill A2938 which would appropriate $1.2 Million to finance the purchase of defibrillators for each public high school. To date, over five hundred letters have been mailed. We are also working to introduce a bill in the legislature that would require all children in the State of New Jersey to have an EKG test at ages 6 and 13 in order to detect potentially fatal cardiac disorders. Several legislators have expressed interest in sponsoring this legislation.

Shortly before Danielle died, she wrote the following passage in her diary. "Life is a treasure. We should take whatever it brings us. Sometimes bad will come our way. And, sometimes good. But that does not change who we are, who we were, or who we will be." We hope that those words and the memory of our beautiful child will continue to inspire us and give us the strength to go on.