There is a story that my great-grandmother used to tell about her early childhood. She lived on the Canadian side of the Niagara Falls, where her parents ran a hotel. One of her responsibilities as a young child was to buy bread for her family. The bakery her mother favoured was on the southern bank of the falls, in the United States, and to get there my great-grandmother needed to ride her tricycle across the bridge that spanned the two countries, high above the Niagara Gorge.

One morning after visiting the bakery, a loaf of bread tucked under her arm, she was setting out for home when a tall construction worker blocked her way. ‘You can’t cross the bridge now,’ he said, telling her it was too dangerous as several slats had blown away, leaving gaping holes in their wake. ‘But I have to get home,’ she said. ‘I live on the other side.’

The man acquiesced, lifting her with one arm and carrying her tricycle in the other. He gave her one instruction: ‘Don’t look down.’ But my great-grandmother couldn’t help herself. As the man stepped over a gaping hole in the bridge she opened her eyes and looked down into the black waters below. In shock, she dropped the loaf of bread. It twirled as it fell and barely made a splash when it broke the surface, 160 feet beneath her.

I never met my great-grandmother. I know this story because she told it to my father when he was young and he, in turn, told it to me. It was one of my favourites from his roster of Niagara Falls tales. I loved it because it was about a little girl, it was a little bit scary, and it ended well – the bread was lost but my great-grandmother made it across the bridge. Most of all, I loved how the story was connected to me.

As a folklorist, I believe that storytelling is as important to our health as eating well and getting enough sleep. I’m not alone. In a study on resilience, researchers at Emory University and the University of North Carolina discovered that children who knew family tales, in particular stories from before they were born (like my great-grandmother’s story of losing the bread) developed better coping mechanisms. Knowing stories which included both good and bad elements made for an even stronger base.

In my line of work I study the stories people tell to explain their worlds. Since becoming a mother, I’ve been looking to stories to explain my own world, too.

My first child was born with a genetic condition called albinism, which is a lack of pigment in the hair, skin and eyes and results in a visual acuity near the legally blind mark. It’s recessive, meaning that both parents need to be carriers in order for the condition to manifest, and it’s rare – the rate of occurrence is one in 20,000.

In the beginning, I had no family stories that could explain this quirk in my DNA, so I turned to folklore. I was studying for my PhD when my daughter was born, and when I returned to work in my windowless office at my university’s library I was often drawn out of my dissertation and into the book stacks, seeking out stories and beliefs about albinism and human differences worldwide.

Some tales were beautiful, where people with albinism were revered and given special positions within societies. Other stories were terrible and they tormented me. Early in my daughter’s life I typed the word ‘albinism’ into a search engine and discovered a series of unthinkable headlines out of Tanzania where people with albinism are not only persecuted and ostracised but also hunted, mutilated and murdered. I learned about quack witch doctors who make potions from the body parts of people with albinism, sell them to businessmen and women, politicians, and other wealthy citizens who believe it is a magic elixir that will bring them luck in love, life and business.

If Tanzanian journalist Vicky Ntetema hadn’t risked her life to report on these crimes in 2008, the rest of the world might never have known about this terrible practice. Now, people are working to change this story. Yet another reason why we need to share narratives – both good and bad.

After looking at tales of albinism across the world I decided to search my family history for clues in my genetic makeup. I turned to my father, who’d regaled me with stories from his native Niagara Falls as a child. His family narratives were strong and multi-generational, and this is how a series of tips led me to my great-great-aunt who had five daughters – four of whom had albinism. The oldest girl became a chiropractor, one of only two women practising in Canada at the time. I tracked down her daughter, who is now in her nineties, and she shared stories about her mother (as well as photographs), painting a portrait of a strong, interesting and respected member of her society.

Hearing about my long-ago ancestors with albinism provided the tangible connection I’d been looking for between my past and my present. It sparked that same sense of belonging I’d felt as a child when listening to the story about my great-grandmother. I hope that my daughter feels the same way when I tell her about the family members who shared her genetic difference, and how her birth inspired the journey that led me to them.