ABOUT

THE FONDATION POUR L’ÉPILEPSIE C.G. HISTORY

IN 2019, THE FOUNDATION IS RENAMED

Before 2019, The foundation was created by the Guindon Family and neurologist Dr Lionel Carmant. In 2019, la Fondation pour l’épilepsie Charles Guindon is renamed Fondation pour l’épilepsie C.G..

Here is Charles’ story.

Charles Guindon was born August 18 1992 in a loving family. He is the youngest of a family of three children. Four months after his birth, during New Year’s Eve, while celebrations were well engaged, the mother, Sylvie rapidly understood that something wasn’t right. Charles was having his first seizure.

It was only a few months later that the worst happened: Charles had another seizure … and then another, and another. Very quickly, the toddler multiplied crises at a rate of thirty in a single day.

AN EXCEPTIONNAL DOCTOR AND EXTENSIVE CARE

Dr Lionel Carmant, neurologist at Sainte-Justine Hospital took Charles under his wing when he was three years old. With the incredible help of Dr Carmant, Charles received all the necessary care.

Together, the Guindon family and Dr Carmant attempted the ketogenic diet and an array of treatments. Unfortunately, none gave Charles the anticipated relief.

In these circumstances, the neurology team of Sainte-Justine Hospital proposed a difficult solution to the Guindon family: lobectomy. This operation involved removing a problematic portion of the child’s brain. By removing part of Charles’ skull, neurologists were able to observe the activities leading to epileptic seizures.

The doctors noted that 80% of the seizures came from the left frontal lobe. By removing this part of Charles’ brain, they could greatly limit the seizures, but not completely eradicate them since 20% of the crises also came from the right lobe.

Additionally, consequences of the operation had to be considered as they implied that Charles would have to live with an intellectual disability. Although, without imminent action, Charles couldn’t have kept up such a frantic pace of epileptic seizures. So the family decided to go through with the surgery. Thanks to the impressive skills of the team, the operation was a success and the number of seizures fell dramatically.

When Charles reached adolescence, surgeons performed a second operation. He received a device implanted in the chest that sends impulses through the vagus nerve and destabilizes the brain activity to reduce the number of epileptic seizures.

CHARLES TODAY

Despite the operations, Charles takes orally 4 drugs twice a day; about twenty pills. The seizures are now contained, but still present from time to time. Due to the attention of the Sainte-Justine team, the Guindon family is convinced that Charles is now living the best years of his life.Indeed, despite everything, Charles is a particularly loving and joyful son. He enjoys life and the presence of his loved ones. He is called “the king of hugs”. Charles could live in the arms of his parents without interruption, 24 hours a day, 7 days a week. He is an impressive young man with an incomparable strength of life.

La section d’information de la Clinique d’Épilepsie Neuro Rive-Sud répond aux questions les plus fréquemment poséessur l’épilepsie. Vous trouverez de l’information sur l’épilespsie et les crises, les traitements et les services proposés pour aider à vivre une vie sociale épanouie avec la maladie.

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