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Laurentides20242023

Raphaël Escallier

11 years old

Raphaël is afflicted with Tourette syndrome, a neurological disorder characterized by involuntary motor and vocal tics. Symptoms often appear in childhood and vary in intensity.

"Raphaël's story is that of a little boy who loved coming to the Telethon to donate money for sick children, it was a tradition. And one day, our world turned upside down: we became beneficiaries. When our world collapsed, the spark of the Enfant Soleil family took over," confide Raphaël's parents.

  

The first symptoms

Raphaël was just over three years old when, one day, he had a fever. His parents gave him ibuprofen and invited him to lie down for a while on the couch. A few minutes later, they found him having convulsions. They rushed him to the Laurentian Hospital in Sainte-Agathe-des-Monts, where the team prepared to intubate him.

"We thought we were going to lose him," recalls Stéphanie, his mother. After 35 minutes of convulsions, the medical team finally stabilizes his condition. Raphaël is semi-conscious but still sensitive to pain. He feverishly rubs his fingers on the hospital bed sheet, a gesture his parents recognize well, but had always considered a way to comfort him.

That day, they realized it was a tic.

A difficult diagnosis

Over time, Raphaël developed more and more tics: throat clearing, coughing every 25 seconds, disturbing head movements, and persistent blinking. When he was 7, his school notified his parents that Raphaël was in "malfunction," meaning he was no longer functioning in a traditional environment, like a plane without a pilot. He had to be rushed to the hospital. The situation was so concerning that his parents got an immediate appointment with the pediatric psychiatry team at CHU Sainte-Justine. Within two weeks, Raphaël saw several specialists at Saint-Jérôme Hospital and was admitted to the Tourette Clinic at CHU Sainte-Justine.

It was at this point that the diagnosis was made: he had Tourette syndrome.

A path to understanding

The whole family's world turned upside down. Especially since, as active partners of Enfant Soleil for years, the parents suddenly found themselves transitioning from donors to beneficiaries. Understanding the disease and learning to live with its overwhelming manifestations was a trial. "When we learned the diagnosis, we were both relieved and sad. We had answers as to why he behaved the way he did, but since this syndrome is still not well known, we had few answers on how to approach it," his mother confides.

The little boy faced judgment and misunderstanding from both adults and children. "Parents don't want him to play with their children because he might have a bad influence: this reinforces his behavior. It's a vicious circle of rejection that's hard at 8 years old," explains Stéphanie. Raphaël had to cope with many losses, which had a devastating effect on him. He expressed suicidal thoughts. Pointed out for his bad behavior at his private school, isolated and rejected because of the lack of understanding of his illness, Raphaël felt overwhelmed by the adults' expectations of him, which he couldn't meet despite all his goodwill and efforts. "He would collect all the green school coupons he received for good deeds and spread them out in his room to remind himself that he was good. It was heartbreaking," his mother recalls.

It took a lot of love and support for him to get back on his feet after being expelled from his private school. Today, Raphaël is doing well. He attends a specialized class, adapted to his condition, where he can thrive and develop peacefully. What he wishes, he explains simply: "I want to be different like everyone else."

"We realize how, when we have tears in our eyes watching these children's stories on our screens, there are thousands of families who don’t tell their own stories but are also facing challenges. We absolutely have to stick together to support them," share his parents.

– Stéphanie Lebrun, Jérémie Escallier, and Lucas (14 years old)

Raphaël's perseverance

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