I do not know why my good-looking grandfather, David, married my unattractive grandmother, Marion, but from all accounts the marriage was a happy one. He was 25 and she just 19 when they were wed. Ten months later they had a baby boy they named Eugene after David’s father.

Marion had an elongated oval face with a pointy chin, and a too large nose. Because of these, despite her shiny dark brown hair, soft flush lips that exuded warmth and large umber eyes that were both calm and smiling, an honest observer would judge her homely.  In contrast, her husband, David Weiss, was movie star handsome. He had brown hair, a straight nose, strong jaw, and grey-green eyes. He also had a great physique. Though David was a short man, he was taller than Marion.

I suspect David saw Marion as pretty. Love has its own eyes. I twice saw people I admired as physically attractive, though they were not. For me this was an unintentional change in perception. I didn’t purposely ignore their offending features; they were simply transformed in my eyes. I was shocked when I met them years later because then they had crooked teeth, skewed features, and warts. But before long, my affection and admiration tricked my eyes and I again saw them as handsome.

Marion had a Midas touch. Instead of turning things into gold, her touch made the ordinary, extraordinary. Her meals were artistic statements. Carrots were coiled, radishes sculpted, mashed potato swirled, dabs of ketchup or mustard added balance and interest, and parsley or other greens completed her culinary presentations. Similarly, she decorated every room in her house with expert care. Tasteful art adorned the walls, classic furniture was placed to advantage. Marion was also a gifted dressmaker. She fitted and designed dresses from their home.

On the morning of August 10, 1916, Marion sewed as four-year old Eugene played happily on the floor. Marion was stitching white lace trim on a dark blue dress and wanted to get it just right. Eugene was doing somersaults: head up, head down. His straight hair flapped with each tumble. He was laughing and proud. He was good at flips and almost never lost his balance. But that day his equilibrium failed him. His legs came tumbling down and struck a massive floor-standing mirror. The mirror teetered back and forth, back and forth, gaining momentum until it crashed down on the little boy with all its force.  Eugene lay motionless beneath the shards of glass. Incredibly, in just the time it took Marion to cross the room to reach her son, he was dead.

This tragic accident haunted my family for generations. I first heard of it when I was six. I saw a small snapshot of Eugene under a thick glass top, fitted to protect my parent’s double mahogany dresser in their Flatbush Brooklyn bedroom. It was set among many other family photos.  I loved to look at them.

“Who’s that?” I asked my father.

“That’s my brother.”

“Ya mean Uncle Cy?”

“No, not Cy, another brother.”

“Ya have n’other brother? Who’s he? Do I know him?”

“His name was Eugene. He died when he was a little boy.”

“How can a little boy die?” I asked in shock and sadness.

Dad explained about Eugene’s accident and the heavy mirrors they used in those days.

I was inconsolate. How could my dad talk about this calmly without crying?

“This is too sad. Aren’t you sad?” I sniffed.

While trying to cheer me up, dad explained that it happened a very long time ago. It was not sad for him because he didn’t know Eugene.

“But he was your brother. Ya gotta know your brother.”

“No, he died before I was born.”

That was a little less sad. But I was still very worried for his parents.

I have thought about this heartbreak my whole life. My sister felt the weight of it too, and we shared the story with our children.  My father’s younger brother Cyrus’s children, Martin and Margy were also moved by this catastrophe. How did Marion and David find the strength to have another child? How could Marion have let this happen? How could she have continued as a dressmaker, using other mirrors just like the one that killed Eugene all throughout Norman and Cyrus’s childhoods? How could she?

When I attended my cousin Martin’s 50^th wedding anniversary party, a few years ago, we began discussing the accident. By then all our parents had passed. Marty posited that Eugene was younger, not older, than my father. That seemed logical since the surviving brothers, Cyrus and Norman, were ten years apart in age. In Marty’s mind, Eugene must have been the middle brother. Furthermore, Marty had heard that Norman was babysitting for the younger boys when the accident occurred. What a blow!

Could this be true? Was it possible that my dad, my idol, was responsible for the mirror falling and his brother dying? Could my dad have been guilty of manslaughter? Could he have shouldered this terrible secret all those years?

When I returned home, I immediately used the ancestry.com website to investigate this upsetting alternate story. I looked up the birth and death dates of the three brothers. According to Eugene’s death certificate he died on August 10, 1916 at the age of four and a half. Birth records showed Norman was two and Cyrus was not yet born. That was a relief. Dad could not have been babysitting when he was only two! True, Eugene did not die before Norman was born as I had been told. But just as dad said, Eugene was his older brother. Also, dad would not have remembered Eugene, because he was so young at the time of Eugene’s death. Since I knew the cause of Eugene’s death, I ignored that section of his death certificate. Only years later would I go back to it, discovering an important family secret.

Dad’s father David was 19 when he immigrated to Scranton Pennsylvania with his parents and two older brothers, Samuel and Nathan Weissman. The brothers were both highly skilled tailors.  Samuel started a successful tailor shop and made custom suits for Scranton’s most discerning customers. Nathan worked with fur. He was a little temperamental, but his talent was in such demand that he was driven home for lunch each day by eager customers, at first with a team of two horses and later in a Reo.

The family, which was Ashkenazi Jewish, came to the United States in 1906 from Kharkov, the second largest city in the Ukraine, less than 20 miles from the current border with Russia. David and Marion told of Kharkov’s wide streets and big squares. Although at different times in the past, Kharkov had been part of the Russian empire, Russia itself, or Poland, when my family lived there it was in “Little Russia”. They spoke Russian and listed Russia as their country of origin on official papers.

 

Although Kharkov was outside of the Ukrainian Pale of Settlement, where all Jews were supposed to live, many Jews, including soldiers, students, artisans, tailors, and merchants, were given special permission to settle there. Some even held important positions in banks, medicine, engineering, and the arts. My ancestors were tailors who had only a few years of elementary school education. The Kharkov population was about 35% Ukrainian, 55% Russian and 10% Jewish.

During the 1880’s and 1903-1906 pogroms, Jewish men, women and children in the Ukrainian Pale of Settlement were brutally butchered and Jewish babies were literally torn to pieces before their parents’ eyes. The Jews of Kharkov were spared these atrocities but were nonetheless subject to severe anti-Semitism. In 1893, sixty-seven Jewish families of craftsmen were forced to leave the city, followed by other expulsions of Jews with important positions. The vicious murders of their nearby brethren made the Kharkov Jews very nervous. And the far-right anti-Semitic movement of the Black Hundreds, which even denied Jews the harsh choice of baptism over death, began in Kharkov.

Countless Ukrainian and Russian Jews, including my family, chose to leave and never look back. They and their children refused to be victims. Instead, they embraced opportunity and started anew.

Many accomplished Americans are descended from those Ukrainian Jewish immigrants including the female astronaut, Judith Resnik, who died during a failed space shuttle launch, the composer Leonard Bernstein, the folk singer and song writer Bob Dylan, the actor Leonard Nimoy who played Mr. Spock in Star Trek, the astronomer Carl Sagan who explained science clearly to the public, and movie producer Steven Spielberg.

Unlike his older brothers, my grandfather, David Weissman was not yet ready to settle down and open a business when he first arrived in Scranton. Instead, he shortened his name to Weiss and left home to seek adventure and make his fortune on the railroad.

Railroads were then rapidly expanding throughout the United States. They supplanted canals for transporting coal from Carbondale Pennsylvania to New York City.

David met, and became close friends with, Isaac Tonkin, the grandson of a Civil War hero. Isaac had connections that helped David get a job on the Delaware Hudson Railroad. Before long, David married Marion Milner. He and his young bride, moved in with Isaac and his wife Hanna in their large house at 55 Grove Street. Both Eugene and Norman were born in this house, which was only a fifteen-minute walk from downtown Carbondale. By the time of Eugene’s death, David and Marion were living in their own place in the center of the city.

Recently, while developing this story, I looked at Eugene’s death certificate to learn more about the details of his death. I was amazed to discover that there was no mention of an accident or injury of any kind! Instead, it stated that Eugene succumbed to congestive heart failure, following a five day stay at Carbondale (Pennsylvania) City Hospital!

This discovery had huge modern-day implications for my family. But let’s turn our minds back to Marion and David. Why would they fabricate the heartbreaking story of an accidental death based on Marion’s negligence?

I am convinced that Norman and Cyrus were told the fictitious story about the mirror and never questioned it. This deceit likely made the tragedy even harder to bear for Marion and David. When my husband was five, his 18-month-old brother died of Whooping cough, he remembers music and happiness banned from his house for years afterwards. My mother-in-law was still traumatized by her loss when I met her twenty years later. I believe Norman’s childhood was marred by both his brother’s death and the falling mirror ruse.

Likely, the motivation for the mirror story was to protect Norman and Cyrus from being shunned as marriage partners. It was common at that time for Jews to hide suspected hereditary defects. Possibly Marion and David even knew that other relatives had similar ailments.

The fact that four-year old Eugene’s death was caused by heart failure was well known in Carbondale. There were articles about it in at least two local newspapers at the time. Marion and David could not remain in Carbondale if they wanted to establish a fiction of accidental death. Indeed, they soon left their Carbondale residence and their good friends the Tonkin’s and started over in Scranton near David’s brothers.

Sadly, Eugene’s passing was followed by other untimely cardio deaths in my family. Most catastrophically, on November 16, 2008, my sister’s seemingly healthy 36-year-old daughter, Karen, suddenly collapsed and died. At the time, Karen was newly married, six months pregnant, and on top of the world. She was at a restaurant with her husband celebrating his 37^th birthday. She died instantly, despite a rapid emergency response from nearby Cornell Weill Hospital. A post-mortem cesarean section was unable to save her unborn son, who lived less than an hour.  Karen’s autopsy indicated no foul play, no aneurysm, a natural death. But how, why? At first, her heart seemed fine, but the New York City Coroner sent it for further study which showed Karen died from dilated cardiomyopathy (DCM), an enlarged weakened heart.

This conclusion sent shock waves through my family because my sister Diane also had DCM. Indeed, she nearly died from congestive heart failure when she was in her 50’s. But then a DCM diagnosis led to her life-sustaining treatment. Her internist first thought her breathing difficulty was a sign of pneumonia, but her physician daughter-in-law suggested the trouble might be in her heart. A cardiologist diagnosed her properly, saying the cause of her heart trouble was likely a rare complication of a virus because she didn’t have any risk factors for DCM. But Karen’s autopsy report made us realize that her illness was genetic and not a result of a viral infection at all. Clearly, Diane had transmitted the deadly gene to her daughter.

A mutation, that could attack and kill members of my family at any time seemed to be on the loose. I am a geneticist, so I decided to hunt down the killer before more of us were picked off in God’s cruel game of Russian Roulette. My sister was an enthusiastic partner in this search. We were both desperate to protect our children and grandchildren.

With the help of research genetic cardiologists, Drs. Elizabeth McNally and Michael Arad and their colleagues, the novel dominant mutation that caused both my sister’s and niece’s disease, was definitively identified in 2016. This news came shortly after my sister’s death at age 73, 18 years after her diagnosis with DCM, and 7½ years after her daughter’s sudden death.

One surprising discovery about this mutation is that it is present in about 1 in 800 Ashkenazi Jews, but not in any other ethnic group. This ethnic specificity and high frequency indicates that the mutation was not new to my sister. Rather, it was already present roughly 500 years ago, in a small Jewish community that intermarried to become the current Ashkenazi population.

Most probably, my grandmother Marion, who died in her sleep at age 59, had the mutation and gave it to two of her sons, Eugene and Norman. It killed Eugene when he was 4. My father survived his heart disease until he was 66. Both Marion and Norman’s deaths were coroner cases because, they were not preceded by illness and were unexpected. Unfortunately, neither of them were autopsied because the family followed Jewish law prohibiting disfigurement of a corpse. Little did they realize they were rejecting a procedure that could have helped save the lives of their children and grandchildren.  If they had known, the Jewish dictum to save a life at all costs, would have superseded any reservation about autopsy. Poignantly, had we known the true cause of Eugene’s death, or had the family allowed the autopsies, we may have realized that my sister’s congestive heart failure was likely genetic soon enough to save Karen.

Subsequently my nephew and I were genetically tested. We each had a 50% chance of inheriting the DCM mutation. Mercifully, neither of us had it! This meant my nephew’s three sons and my two children, as well as their two children were all safe. Happy days! We won the lottery!  My sister’s and my prayers were answered.

I called out desperately to Diane across the bridge of death, with my bittersweet news,

“They are all safe. The heavy cloud of fear has been lifted. Rest in peace sweet sister.”    

 

 

Addendum: Currently genetic tests and screening are available to warn families of the presence of ticking time bomb mutations like the Ashkenazi Jewish 3791-1G>C mutation in the FLNC gene found in my family. Once such mutations are identified, their associated death sentence decrees can be averted by early diagnosis, medication, and implantation of defibrillators. FLNC is one of the genes sequenced in the Cardio Panels offered by GeneDx, Ambry, In Vitae and perhaps other clinical genetic testing companies. Also, In Vitae now offers a $250 Cardio Screen that does not require medical necessity. 

 

Dedication: This story is in memory of Marion Milner Weiss, Eugene Weiss, Norman H. Weiss, Diane Weiss Rothman and Karen Rothman Fried. Their memories are for a blessing.

 

Susan Weiss Liebman is a Distinguished University Professor Emerita at the University of Illinois at Chicago and a Research Professor in the Department of Pharmacology at the University of Nevada, Reno. She taught genetics for more than 30 years and has published over 100 peer-reviewed research papers in molecular genetics. The sudden death of her 36-year-old niece led her to help find and study a new Ashkenazi Jewish founder mutation that causes sudden death, and to become an advocate for genetic screening. See https://heartstudy.wixsite.com/unrmed to learn how to participate in a research study involving this mutation.