Despite their lack of education, the people with aniridia had no trouble noticing that aniridia was transmitted for generations from the parent to a child. This was clearly obvious to them. It would apparently have been clear to others as well. We have heard an anecdote concerning a Grand Falls doctor who had advocated sterilizing all of them to end the transmission of aniridia. So far, we have found no documentary evidence to support this.
Others, however, weren’t as easily convinced. This led to the Canadian National Institute for the Blind (CNIB) to ask researchers to look into why the Grand Falls area would have so many people with aniridia. At the time, the CNIB suspected the cause could be malnutrition, a sexually transmitted disease, or the "degenerative effects of inbreeding".
The CNIB probably had good reason to suspect a link between aniridia and at least two of their three suspicions. Almost all people with aniridia lived in poverty, and some families were hit very hard during the Great Depression of the 1930s. Malnutrition would certainly have been a concern, but it does not cause aniridia. As for inbreeding, it’s easy to jump to conclusions when a genetic condition exists among members of a same extended family.
These weren’t the only theories at the time. One of the craziest ones to come was that someone along the way mated with a dog (How else do you explain those eyes?). Unfortunately, there was at least one in the extended family who actually thought it may be true. She was quite relieved to learn it wasn't!
Still, it’s good thing the scientists responded to CNIB’s request. They visited the people, performed tests and took down genealogical data which, for genealogical researchers today, is invaluable, even if no names can be found in the chart itself.
This information would eventually find its way into the hands of a couple in the Grand Falls area who had been looking into the same question from a genealogist’s point of view. Suzanne Lajoie and her husband, Hugo Larsson, had always toyed with the idea of trying to determine exactly where this aniridia may have originated in Suzanne's family tree. Having no experience in genealogical research and knowing no one who could introduce them to the field, it remained nothing more than an idea until about 1995 when they heard about a book put out by Gilbert Gagnon of Grand Falls. He had traced the Gagnon line all the way back to France.
They decided to meet Gagnon and find out more about his book. When they arrived, Gagnon had also drawn up the bare essentials of the Marcelline Bernier’s ancestors and pointed to one set of her grandparents Joseph Sansfaçon and Perpétue Martin. "That's where the perpétues started," he said, almost off-handedly.
Hugo and Suzanne had heard the word « perpétue » and knew what it meant. They were soon asking questions to which he had no answers. He only knew of the people with aniridia and the connection between them and Perpétue Martin. The Larssons now wanted to find out everything they could, on their own if they had to. And Gagnon was ready to show them what he knew.
As time went on, they were able to confirm much of what he had told them about this particular line. Thanks to Suzanne's father, they had at least one eye witness to confirm that his grandmother, Marcelline Bernier, had aniridia. They also found out that her brother, Damase, had aniridia. Through deduction, they found out her sister, Adèle, also had it.
Sporadic aniridia is already quite rare. The chances of three siblings having sporadic aniridia are prohibitively small. The logical conclusion is one of the parents had to have it as well. The question was: which one?
The parents of these children were François Marcel Bernier and Julienne Consigny dit Sansfaçon. Julienne Sansfaçon was born in the Madawaska region to Joseph Sansfaçon and Marie Perpétue Martin. Her grandparents were Louis Sansfaçon and Madeleine Thibodeau on her father‘s side, and Simon Martin and Geneviève Bourgoin on her mother‘s side. Both couples were among the first permanent settlers in Madawaska who arrived in 1785.
François Marcel Bernier was a "Canadien" (French Canadian) born in the Lower St. Lawrence region, possibly at Cap Saint Ignace. He may have lived in the present-day county of Aroostook in Maine as many of his children from a previous marriage were still living in the religious parish of Saint Bruno during the parish census of 1872. St. Bruno was mainly centred in and around Grande-Rivière, a community which spanned both sides of the St. John River until it was split by the present-day international border. Today, the Canadian community is called Saint Léonard while the American one is called Van Buren.
Was François Marcel Bernier, a newcomer to Madawaska who arrived during the early to mid 1800s, the source of aniridia in Grand Falls? Or was it Julienne Consigny dit Sansfaçon who lived in Madawaska all her life and was a descendant of two of the first pioneer couples? If it was Julienne, it spelled certain death for the "Sainte-Perpétue" theory.
They spoke to another descendant of the family, the late Pierre Albynie Lajoie who, in his mid-80s, was still quite sharp mentally at the time he was contacted. While he, like so many others, had espoused the "Sainte-Perpétue" theory, he also added that everything he knew seemed to indicate it came from Julienne's side. He then admitted that, in his own research, he hadn't studied the side branches all that much and knew little of the Sansfaçons. He didn't know they had been in the area far longer than the Berniers. He only knew that aniridia did not come from the Berniers originally.
With one theory dropped, at least for now, the Larssons tried to see if the other one could be confirmed. No one who had known this couple was still alive in the 1990s when the couple undertook its research. They could only hope something about this had been written down somewhere.
Unfortunately, aniridia isn't something people around here liked to talk about publicly. Despite the fact that it's more common here than in most areas, no historian ever bothered writing about it. Since it was a disability, no one even wanted to mention it, let alone try to understand it. The fact that Perpétue Martin is a common ancestor to all of them made it a tantalizing theory. But how could it be established?
