Stronger Than the Disease: Jani’s Incredible Victory

Since childhood, Jani, 46, has lived with fragile bones. Fractures were part of her daily life for many years.

Even so, she never stopped believing it was possible to push beyond the limits imposed by her condition.

A former patient at Shriners Hospitals for Children Canada, she lives with osteogenesis imperfecta (OI), also known as brittle bone disease – a rare genetic condition that causes bones to break easily, often with little or no apparent cause.

Today, her journey has taken a remarkable turn.

During an appointment with her new physician, Marie-Eve Robinson, M.D., CM, MSc, FRCPC, pediatric endocrinologist and clinician scientist at Shriners Hospitals for Children Canada, specialized testing revealed very encouraging results: trabecular bone density measured in Jani’s forearm falls within the normal range.

“If I looked only at this result, without knowing that Jani has osteogenesis imperfecta, I would never have guessed it,” Dr. Robinson said. "Patients like Jani diagnosed with OI in the 80s were among the first studied in the world, here at Shriners Hospitals for Children Canada. To see her reach this milestone shows just how far discoveries at this hospital have come in one generation."

The news was overwhelming for someone who has spent so much of her life dealing with fractures and bone fragility.

“I had tears in my eyes. I couldn’t even speak,” Jani said. “For someone who has had fractures my whole life, it was extremely reassuring.”

The first person she shared the news with was her partner, Manon, before calling her parents. “They were impressed and so happy for me,” said Jani.

A Journey Marked by Resilience

Followed at Shriners Hospitals for Children Canada in the 1980s by François Fassier, M.D., M.Sc., FRCSC, chief of staff emeritus and Francis Glorieux, M.D., Ph.D., director of research emeritus, Jani grew up facing the daily challenges of OI.

Over the years, she experienced multiple fractures, an experience she recounts in her autobiography, 157 Fractures: A True Story. Despite the obstacles, she has always refused to let her condition define her limits.

“I always wanted to prove to myself that I was stronger than my disease.”

Sport as a Driving Force

For Jani, physical activity played a decisive role. When she was a young child living with OI, exercise could be frightening. “We were told to exercise, but sometimes we ended up with fractures from doing it. It was scary.”

Instead of giving up, she chose to move forward gradually, strengthening her body little by little. That determination led her to an unexpected challenge: marathons.

In 2018, she registered for the Montreal Marathon. There was no category for wheelchairs, but she decided to take part anyway.

“I registered as a runner. I almost felt like a delinquent,” she said with a laugh.

She finished the race in 4 hours, 12 minutes and 29 seconds, becoming the first marathoner using a standard wheelchair to complete the event – an achievement that, for a long time, seemed impossible.

For Jani, that moment was only the beginning.

Since then, she has completed 13 marathons worldwide, turning every finish line into a victory, and now holds two Guinness World Records for the fastest marathon completed in a non-racing wheelchair.

In March 2025, in Barcelona, she pushed her limits even further by breaking her own record with a time of 4 hours, 1 minute and 1 second.

And her story is still being written. Next May, in Chicago, Jani will aim for another world record – this time in the half-marathon – with the same determination that has carried her this far.