There are so many things that I encounter in life that are easier because of the actions that others took before me. I’ll never say that losing a son was easy, or made easier, by anyone’s conduct, but it is clear that the mission of Simon’s Fund was forged decades ago by Doris Toran Goldman.
If it were not for Doris’ actions, the world may not have known about Long QT Syndrome. We would not have known the cause of Simon’s death, or how to treat the health condition shared by Phyllis. We may not appreciate the importance of heart screenings for our children. The organization C.A.R.E (www.longqt.org) would not exist. The list goes on.
I got to speak to Doris a couple of years ago. I wanted to hear from the expert about what we should be doing. She was focused, passionate and spunky. We know that there is still so much to be done to raise awareness about conditions that lead to sudden cardiac arrest and death in children. However, we want to thank Doris for clearing the brush and paving the road. It is an honor to continue what she started.
Here is her brief story –
Doris Toran Goldman, 77, was born and raised in Philadelphia, PA, and lived in Laguna Wood, CA. She passed away on July 29 from lung cancer.
What could be worse than the sudden, unexpected and unexplained death of one of your children? Especially if that 20 year old son looked as healthy and handsome as Jack did on his last day of backpacking in Grand Teton National Park, Wyoming. And yet, it was to be his final day. Just hours after climbing comfortably into his sleeping bag, he died in his sleep with no apparent medical explanation for his death.
The only thing worse would be to have this happen again – and it did! This time, it was my youngest child, 29 year old Sharon, relishing her new marriage and happily loving her new role as a mother.
But she too died in her sleep, leaving behind a distraught husband and a now “motherless” five month old son. My son Jack and daughter Sharon were in their 20’s and living life to the fullest, when their lives were abruptly snatched away. Refusing to accept the fact that the medical community seemed to offer no absolute answers, my surviving daughter Nancy and 1, together with Dr. William Mandel, began an investigation in a desperate attempt to finally resolve this mystery. We did family trees of all four family lines and asked everyone to send cardiograms to Dr. Mandel.
Most of our relatives complied, and a pattern soon began to emerge.
It was apparent that many members of my maternal line had the Long QT syndrome, including Nancy, and Sharon’s infant son – and that I was the carrier. If only some doctor had asked to see my cardiogram while Sharon was alive, they would have seen that I clearly have the Long QT Syndrome, as do 21 members of my family. Those considered “at risk” are taking medication that is highly effective in preventing a lethal incident.
What Nancy and I learned was that when nothing shows on autopsy, the cause of death might be determined from the living – if the cause is genetic. If this could happen to us, how many more people were out there who had lost a child and did not have a clue as to the cause of their death?
Perhaps they could follow our lead, and with routine screening of surviving family members, actually determine the cause of death – saving the lives of other family members.
Nancy and I then embarked on a nationwide campaign several years ago to make the public aware of a disorder about which most people had never heard. This outreach resulted in thousands of calls coming into a hot line, and many callers or their relatives were ultimately diagnosed with LQTS and other heart rhythm disorders, saving many lives.
An historic scientific breakthrough occurred in March 1995 when Dr. Mark Keating of the Howard Hughes Medical Institute at the University of Utah called to tell me that he had just discovered two genes that cause Long QT syndrome. This discovery actually shed light on the workings of the electrical activity of the heart, and is expected to impact other potentially lethal arrhythmias. And then in January 1996, a third gene for LQTS was also identified. The scientists are working with incredible speed – and they need our support NOW! Their immediate goal is to develop a simple blood test – and a cure.
These discoveries were the impetus that led to the formation of Cardiac Arrhythmias Research and Education Foundation, Inc. in April 1995.
This came too late to save Jack and Sharon, but the lives of many more innocent children and young adults will be saved through our efforts. For additional information, you can call me at the C.A.R.E. Foundation office at (800) 404-9500.