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Three years after her son's death due to epilepsy, Longueuil's mother wants more of the world to get better informed about this unknown illness.
"I'm doing it a bit to say that I'm not such a bad mother," says Martine Morotti. The woman accuses herself of not hearing anything.
She could not do anything on March 1, 2016. That night, Jeremie Morotti-Monderie's son died from epileptic seizures in her sleep.
He was found early in the morning with his head on his pillow. On February 22, he was only 21 years old. Yesterday, he would be 24 years old.
"I always say to myself, I should … install a monitor to listen better, be less believable in front of the doctors, be better informed," says the mother in mourning.
Since then, Martine Morotti wants to spread the information to as many people as possible so that they are better equipped since the day of diagnosing her child's night epilepsy, then 13 years old. A vacuum in the health system, he says.
Attacks could reach three times a month. The lady did not know the real risk of losing her child from a crisis.
"We can die." One can also die from consequences such as falling or striking but playing with words, "he says.
According to Martine Morotti, the majority of the population "has no idea what it is, of course, to make a crisis." He was never used to it.
"It's not just spasms with a little foam, and then it's over, and we're out again," he says.
Describes body stiffness, phases of incontinence, mouth bump, upside down eyes, memory loss and partial paralysis that can take almost a day, as the case may be.
Adds this is self-esteem, which takes a hit. And the overprotection of relatives, which is constantly a blood of ink.
"Imagine the fear of the daily crisis, the impact on school, at work, on romantic relationships, on the wheel, people feel ashamed, but they have to stop," says the mother.
A public figure with the disease as a spokesman would be enough, according to her, to reduce the taboo.
At the moment, Martine Morotti makes her way, hoping to "serve something".
Works will come next year for the foundation on behalf of his son, created after his death.
♦ March is the month of epilepsy. There are about 45,000 people with epilepsy in Quebec (0.06% of the population), according to the Quebec Association of Epilepsy.
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