In literature and film, maps to buried treasure have typically marked the hiding place with a giant X. Retired entrepreneur and avid genealogist Stanley Diamond would have loved it if his quest had been that easy.

Diamond’s story began some six years ago. He went through DNA analysis at the Research Institute of the Montreal Children’s Hospital. At its conclusion, Dr. Charles Scriver gave the outcome: Diamond was a carrier of a newly identified mutation of the Beta-Thalassemia trait, a potentially serious genetic condition. The discovery set Diamond on a path to identify his trait-carrying ancestors and their existing descendants.

Although he is a carrier, Diamond is unaffected by the trait. Others may not be so lucky. Thalassemia is the most prevalent inherited blood disorder in the world, according to the World Health Organization. The Beta-Thalassemia trait (one of two main types of Thalassemia, alpha and beta) is often misdiagnosed as mild anemia. Like other forms of anemia, it requires blood transfusions every few weeks, but these frequent transfusions cause a dangerous side effect: iron overload. If the resulting iron buildup goes untreated, it leads to health problems and early death.

Cooley’s Anemia Foundation, Inc. estimates that two million Americans are carriers of the Beta-Thalassemia trait. Carriers may pass the trait to their descendants, unaware that there is a one-in-four chance that each child of two carriers will inherit the deadly form of Thalassemia and will not live past early adulthood. Common among people of Mediterranean, Middle Eastern, and Far Eastern descent, the disease is rare among descendants of Eastern European Jews, like Diamond.

To find other carriers in his family, Diamond traced his roots to Ostrow Mazowiecka, Poland, called "Ostrova" by its Jewish inhabitants. He formed a town-based research group to pool efforts and to share the costs of on-site research in Polish archives. Using these records, he successfully traced his family to his great-grandfather, Jankiel Widelec, and wife, Sara Nowes. Jankiel was the son of Hersz Widelec. But Diamond was unable to find carriers among the descendants of Jankiel’s or Sara’s siblings. It appeared that he had hit a wall, although he knew that he had not found descendants of all the siblings yet.

The breakthrough came in February 1998, when he located descendants of Jankiel’s sisters, Fejga and Chaia, whose children had married each other. The key to the breakthrough was, quite literally, in a map.

In early 1998, a member of the Ostrow Mazowiecka Research Family gave Diamond a partial map of Waldheim Cemetery’s "Ostrover Verein" plot. The woman had received the map from the Forest Park, Illinois cemetery office when she was seeking the grave sites of her Dunn family relatives among members of this town-based society.

Diamond, who was also interested in the Dunn family, examined the map and spotted the names of David and Fanny Lustig. He quickly surmised that these names were the American equivalents of Dawid Lustig and his wife, Frajda Bengelsdorf. David and Fanny were the children of sisters Fejga and Chaja Widelec, respectively, and nephew and niece of Diamond’s great-grandfather, Jankiel Widelec. Diamond knew that both David and Fanny may have inherited the Beta-Thalassemia trait–a potential catastrophe for their children. After all, he had been searching for their descendants for three years. Finding their gravestones would be an enormous breakthrough.

Diamond verified the couple’s identity with Lori Hanff, a member of the Waldheim Cemetery staff; he shared details of his research with her as well. Hanff then checked the fathers’ given names (standard information on Jewish headstones) on the stones and provided the information to Diamond. Cemetery staff also told him that Alex Lustig of Wilmette, Illinois, David and Fanny’s eighty-year-old grandson, was listed as the person responsible for maintaining the two graves. Lustig, it turned out, had been diagnosed as a Beta-Thalassemia carrier by his personal doctor, a hematologist, some fifteen years previous.

"Fortunately, I was able to quickly locate the telephone number for the only Alex Lustig in the area. I immediately called and followed up with documentation about the family history and my genetic research," says Diamond.

Upon finding out that Diamond was going to be in Phoenix, Arizona the following week, Lustig urged his newly found cousin to call his son, Steven, a resident of the area. Diamond called Steven on his first day in town and was glad he did. Steven told Diamond that for years he had carried a card that read: "Beta-Thalassemia, elevated A2 Hemoglobin; do not take iron."

A few days later, Diamond contacted Steven’s second cousin, Jim, a physician in Toledo, Ohio. Jim told Diamond that Alex’s first cousins, Lou and George, had been carriers of the trait and that Lou’s son and grandson were also carriers. "It was virtually certain," says Diamond, "that the trait was passed on to Alex, Lou, and George through their fathers, Hyman and Abraham–the sons of a marriage between first cousins. And these first cousins were the son of Fejga and the daughter of Chaia."

Luckily, Jim has been tracking and warning that part of the family. He is now also actively involved in locating and warning other distant branches of the Lustig family.

Upon finding these Lustig cousins, Diamond sent an excited e-mail to Dr. Scriver and his colleague Dr. Oppenheim, both of whom had been following the trait among Eastern European Jews. [In fact, Dr. Oppenheim had made a similar discovery at Jerusalem’s Hebrew University, Hadassah Hospital with a woman who had recently emigrated from the former Soviet Union. It turned out that Diamond’s family and the woman’s family had originated about 300 miles from each other in the Pale of Settlement, the name given to an Eastern European geographic area in which Jews were allowed to settle.]

Diamond wrote in his e-mail message:

"I am quite certain I have made the long-awaited breakthrough to take the source of the Beta-Thalassemia trait in my family back one generation. As you know, until now I have been stuck in 1826, the birth year for my great-grandfather, Jankiel Widelec, and his wife, Sara Nowes . . . Last week I finally found living descendants of Jankiel’s sisters, Fejga and Chaia. These were the last two families for which I had not been able to make a connection . . . This breakthrough will make it possible for me to refocus my efforts on certain branches that have not been exhaustively researched and, at the same time, to drop a long list of surnames that are no longer relevant."

The discovery that David and Fanny’s descendants were carriers of the Beta-Thalassemia trait convinced Diamond and the two geneticists that Hersz Widelec, Jankiel’s father who was born in 1785, must be the source of the family’s novel mutation.

(Earlier, Diamond had eliminated Hersz’s wife, Gutka, as the source, since no carriers were found among the known descendants of Gutka’s four sisters.) Diamond had provided the scientists with the greatest number of generations ever reconstructed in the study of the Beta-Thalassemia trait in a clean gene pool. This groundbreaking work would help geneticists all over the world to understand the trait and its effects on one family.

"A most important contribution of Stanley Diamond’s work is that it increased the awareness among his relatives and others about the possibility that they may carry a genetic trait that, with proper measures, can be prevented in future generations," says Dr. Oppenheim. "In addition, the work has demonstrated the power of modern genetics in identifying distant relatives and helps to clarify how genetic diseases are being spread throughout the world."

Of course, Diamond can’t ignore the significance of the Waldheim Cemetery’s map and records. He believes the cemetery records are valuable because they provide much more current information than records accessible from Polish archives. They provide the link between living families and immigrant ancestors.

"That’s why Waldheim’s Ostrover section was so important to me and why burials in all Jewish cemeteries are of potential importance for scientific research, as well as for conventional genealogical study and family reunification," Diamond asserts.

Those interested in researching at Waldheim should know that the cemetery is managed by three superintendents, only one of whom has computerized information. "Every day I get calls," says Hanff. "We can help someone with one or two names quickly. If the request entails more than that, the caller should write to the cemetery."

From the cemetery’s database, researchers like Diamond are able to learn which funeral home made burial arrangements, who is responsible for care of the grave, and the date of death. Yet as supportive and helpful as cemetery staff may be, Waldheim Cemetery adheres to a policy that thwarts genetic research: It will not give out full site maps or lists for particular sections. According to Hanff, preparing these materials can be very costly and time-consuming. But what other links could be made if the information were more accessible to the public? Without seeing the Lustig names on the tailored map passed on to him, Diamond’s search for Beta-Thalassemia trait carriers could not have broken through a very frustrating impasse. For him, his family, and carriers of the Beta-Thalassemia trait, the map itself marked the spot of treasured information.

Return to the Ancestry Magazine March/April 2001 Table of Contents.