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 permanent genetic disease that prevents the formation of strong bones,” according to the Montreal Shriners Hospital, a pioneer in research. on the OI.
“I broke my legs around fifty times, my arms around fifty times. I have broken my neck at least 20 times. That’s dangerous. It was nonsense: sometimes I just turned my neck too quickly, 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 that of London, in April 2024, it intends to make its entry into the Guinness Book of Records.
Barré achieved these feats thanks to his resilience. Resilience such that it deserves attention…
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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.
“Hey, 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 brought me back normally. I was bawling, my daughter! 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 screaming!” », says the Maskoutaine.
Little Jani screamed so much that her parents decided, after a few months, to return to the hospital. X-rays revealed that the little girl was suffering from various fractures.
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,’” 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.
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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 all alone in my bassinet. […] 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.
PHOTO HUGO-SÉBASTIEN AUBERT, THE PRESS
Jani Barre
It felt safe to sit in a chair. When I started school, because of insurance, I had to be seated and strapped in so that nothing would happen to me.
Jani Barre
“When I was in elementary school, one winter, I was at school, I had a hat on my head. There is 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 for life,” she says.
At the age of 5, Jani was transferred to the Shriners Hospital in Montreal, an “extraordinary” place. There, she made several friends living with the same health problem as her. “My gang was them. »
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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 health establishment 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.
Jani met the healthy mouse, who was running fast in his wheel. “Do you want to be like him? », asked his doctor. This mouse, Jani says, was her first idol.
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 has thickened the outline of his bones, even if they are still empty inside. “It really takes a bigger hit before I get through it. »
Today, Jani is proud to announce that she is celebrating 20 years without a fracture.
PHOTO HUGO-SÉBASTIEN AUBERT, THE PRESS
Jani Barre
Inspire as many people as possible
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 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.
It was an inspiring fight more than anything else. I went there to inspire, to demonstrate that, even in a wheelchair, you can box.
Jani Barre
To date, Jani has taken part in three duels.
With her illness, Jani Barré experienced everything delayed. His teenage crisis arrived around his thirties. She began to consume drugs, cigarettes and alcohol in large quantities. It was a bit like his “revolt”. “I was not ill with my illness. I was sick in my head,” she summarizes, pointing to her temple.
She is now completely sober since September 8, 2014. And writing her book 157 Fractures: True Story, in collaboration with his father, then allowed him to accept. Accept everything she is and what she has experienced.
And then there are marathons.
Small jump in time. In 2010, Jani started running 5 kms, then 10 kms, until she completed 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 that, 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 around the world.
PHOTO ROBERT SKINNER, LA PRESSE ARCHIVES
Jani Barré at the Montreal marathon in 2018
Life put me in a wheelchair and it’s great, I like rolling!
Jani Barre
What you need to know is that Jani has half as much breath as 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 in her, 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 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 anymore, it’s because I’m super sporty. »
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When we reached Jani Barré on the phone to schedule the interview, a few days before our meeting, her joy was great. This is because the athlete with an atypical background has a great desire: to inspire.
PHOTO HUGO-SÉBASTIEN AUBERT, THE PRESS
Jani Barre
My mission was to get through whatever I had to go through. But my life intention is to inspire as many people as possible.
Jani Barre
“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 as follows: “The strength 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 work out, but my bones are empty. If I can do this, you can do this. »
Take it for granted.