In 1959, researchers made their way to the Grand Falls, New Brunswick, area to study an as-yet unexplained phenomenon: the large number of people in the area who had condition called aniridia. The following year, they published what is believed to be the first study ever on aniridia in this area without, of course, identifying it or the people involved. At the time, that group of people formed the largest known family in which hereditary aniridia was present to have been studied by scientists.
In April 2000, other researchers would come, in large part, due to the first study published in the 1960s. The authors of the first study took all the necessary precautions to protect the identity of the people they studied. However, it soon became clear that people these new researchers were seeing in their Halifax ophthalmology clinics were from this same family. On top of that, it turned out a local amateur genealogist couple was also doing research on their own in hopes of solving a family puzzle. Soon, the couple and the scientists would share information in hope of finding out more.
Forty years later, this Madawaskan family remains the largest ever family of aniridics to have been studied scientifically. And six generations after the Bernier-Sansfaçon couple, branches of the family where aniridia manifested itself include such surnames as Bois, Lajoie, Gagnon, Michaud, Beaulieu (à Jack Frost), Clément, Pelletier, Rossignol, Levesque, Grenier, Fournier, Page, ...
Given the importance of this phenomenon, it’s surprising that no serious historical attention has been paid to it. To date (2004), two general histories of Grand Falls have been published, not to mention numerous parish and municipal souvenir albums, and none of them mention aniridia or "perpétues" in any way. Except for the most basic genealogical data, all sources have been oral until we discovered the 1960 study.
With the specialists coming to visit in April 2000, the Larssons had sent plenty of information to all the local media in hopes that at least some would take the bait. Of the newspapers, only the Telegraph Journal showed any interest, while the French media was represented solely by Radio-Canada Atlantique. Written information on aniridia in Madawaska will continue to be hard to find, especially in French, the language spoken by most of them.
This short piece is written in the hope that others will someday take a new look at the situation and add new elements to the whole.
In conclusion, here's one other example of how aniridia has had an effect on the social mores of Grand Falls. Suzanne's aunt, who lived about 40 minutes away by car, had gone to the Grand Falls Shopping Mall to get things not available in Perth-Andover. While there, some young teenagers were snickering at them and one said to another: "Ce sont des Clément." (They are Cléments). Well, they were Fourniers, not Cléments. But the Clément family started when Julienne Sansfaçon‘s granddaughter, Alice Bernier, married a certain François (Frank) Clément. Bernier had the aniridia but Clément's name was given to the children. Many had aniridia themselves and, in turn, had large families with more children with aniridia. For the younger generation who didn't grow up hearing about the Perpétues, "Clément" had apparently become the new label of choice!
It should also be noted that the meaning of Perpétue is changing. The last time I heard someone outside the family use the word, it was used to describe someone who dresses shabbily, possibly due to poverty. When I explained where the word actually came from, she didn’t seem to have heard about it before at all.
