Have you ever broken a bone? It hurts, doesn’t it? Imagine suffering 157 fractures in the first 24 years of your life.
“If there is one person who inspires me in life, it’s me. »
Jani Barré has glass bones. That’s the simple way of saying she has osteogenesis imperfecta (OI), “a rare and lifelong genetic disease that prevents the formation of strong bones,” according to research pioneer Montreal Shriners Hospital. on OI.
“I broke my legs about fifty times, my arms about fifty times. I’ve broken my neck at least 20 times. That’s dangerous. It was nonsense: sometimes I would just turn my neck too fast, and clack! »
Today, at 44, Jani Barré practices boxing – yes, yes! Even more fascinating: she is the first woman in Canada to complete a marathon in a standard wheelchair. In fact, she has completed nine marathons around the world; She only needs one to reach the goal of ten that she had set for herself. At the one in London, in April 2024, she intends to enter the Guinness Book of Records.
Barré achieved these feats thanks to his resilience. Resilience such that it deserves attention…
Jani Barré is originally from Saint-Hyacinthe. “I know everyone here! “, she asks us during our walk on rue des Cascades, in the city center. As she rides in her chair towards the Van Houtte café, a few passers-by greet her.
“Hi, Jani! How are you ? », says a lady.
” Number one ! »
This is probably what is most striking about Jani Barré: her joy of life and her positivism. Two qualities that she could very well have lost over the years…
Jani Barré’s story begins when she was born on July 24, 1979. “Congratulations! You have a beautiful, healthy baby! », said the doctor to the parents.
“My parents took me back normally. I was bawling, girl! My father said he was making jokes with it. He even said as a joke to my mother: “My God, we’re not lucky, we don’t have a very sociable child, she’s bawling!” », says the Maskoutaine.
Direction Sainte-Justine hospital, where the doctors quickly put their finger on the problem: the child suffered from osteogenesis imperfecta.
In other words, the parents had a porcelain baby in their hands. “The doctors said, ‘Your child is broken for nothing,’” Jani says, recounting what her parents told her.
It was the start of a childhood marked by a lot of suffering and hospital visits, but also a lot of love.
Little Jani broke one or two bones a week, sometimes more. “It’s not even an expression: I spent half my life in hospital. »
“Baby, I was falling apart in my bassinet all by myself. […] My mother had to barricade everything with pillows. »
At age 3, he had metal rods inserted into his shins; she spent a full year lying on her back with her legs tied in the air.
Until age 10, Jani was “in survival mode.” If she fell while walking, she would fracture a limb. So much so that from kindergarten, she found herself in a wheelchair.
“When I was in elementary school, one winter, I was at school, I had a hat on my head. There was a little boy who wanted to play a little joke on me; he just wanted to hide my eyes with my hat. He broke my neck. »
The fact remains that Jani Barré was a smiling child, with a great attitude despite everything. And that, she insists, she owes to her parents, who were always “extremely positive”. “I was lucky, thank you life,” she says.
At the age of 5, Jani was transferred to the Shriners Hospital in Montreal, an “amazing” place. There, she made several friends living with the same health problem as her. “My gang was them. »
The frustration came as I got older. At age 12, Jani was no longer able to get out of bed without fracturing her collarbone. It was then that she expressed to her parents her desire to die.
His parents visited his doctor at Shriners Hospital. This was good because the healthcare facility had just tried a new treatment on a mouse with fragile bones; the results were positive. Jani’s parents, having nothing to lose and everything to gain, therefore accepted that their daughter would be a guinea pig.
The treatment, which was injected intravenously every day for three days, once a month, increased Jani’s bone density. It lasted eight years.
“Now, I’m super proud to tell you why I stopped taking it after eight years: it’s because I touched the line of normality. »
The treatment made it possible to thicken the outline of his bones, even if they are still empty inside. “It really needs a bigger hit before I get through it. »
Today, Jani is proud to announce that she is celebrating 20 years without a fracture.
Jani Barré has always loved sport, “it’s bubbling inside,” even if she is limited in what she can do. His father, Bernard Barré, has been involved in boxing in Quebec for many years.
“Since I was 5 years old my father has taken me to see boxing. He stuck my little wheelchair on the edge of the ring. »
When her bones reached the threshold of “normal,” Jani did what she had always dreamed of doing: boxing. His father acted as a coach. “Quietly, he showed me how to hit the bags. I wasn’t hitting hard! »
Little by little, the friendly woman built muscles around her bones. It took her two years before she fought in a ring; it was the first Quebec boxing match involving two women in wheelchairs.
To date, Jani has taken part in three duels.
With her illness, Jani Barré experienced everything delayed. His adolescent crisis arrived around his thirties. She began using drugs, cigarettes and alcohol in large quantities. It was a bit like his “revolt”. “I wasn’t sick with my illness. I was sick in my head,” she summarizes, pointing to her temple.
She has now been completely sober since September 8, 2014. And writing her book 157 Fractures: True Story, in collaboration with her father, then allowed her to accept. Accept everything she is and what she has experienced.
And then there are marathons.
Small jump in time. In 2010, Jani began running 5kms, then 10kms, eventually completing half marathons. It was in 2018 that she completed her first marathon, becoming the first Canadian to achieve such a feat in a standard wheelchair.
“Sometimes there are people who say to me: “Jani, wouldn’t you like to have a bike that goes faster, one wheel forward?” If I do this, where is my personal challenge? »
His first marathon was the Montreal marathon. With only three kilometers left, she decided this would be the start of something. His first marathon of 10 across the world.
What you need to know is that Jani has half the breath of a so-called “normal” person; At the age of 16, she underwent major surgery because her body was too sagging due to the softness of her bones. Today, she is completely straightened thanks to the metal rods that were installed, but her breathing is still affected.
Jani has completed nine marathons since 2018; Montreal, Las Vegas, Ottawa, Havana, Miami, Los Angeles, Honolulu, Paris and New York. On April 21, 2024, she will do the one in London.
She is also still actively looking for major sponsors to support her.
Even when she has reached her goal, Jani intends to continue doing marathons as long as her health allows. “Honestly, marathons save my life,” she says.
“If I don’t break any more now, it’s because I’m super sporty. »
When we reached Jani Barré on the phone to schedule the interview, a few days before our meeting, she was very happy. This is because the athlete with an atypical background has a great desire: to inspire.
“Even in my marathons, the beautiful thing is that I motivate a whole gang behind them. No matter where I go, there are several of them running behind and saying to themselves: “It’s not a little girl in a wheelchair who’s going to overtake me for sure.” »
We’ve been talking for almost an hour and a half with the woman who has also been a speaker for seven years. The coffee gradually emptied. At the end of the interview, Maskoutaine tells us about a quote written by her father and which she wears today on her body. It goes like this: “The force of the spirit will always take precedence over its earthly envelope. »
“It’s the best quote that can describe me,” she continues. It’s all in the head. Yes, I train, but my bones are empty. If I can do this, you can do this. »
Take it for granted.
