A five-year-old child convulsing uncontrollably due to a rare disease awaits delicate brain surgery that could help him.
Little William, originally from Saint-Isidore in Beauce, will become the youngest Quebecer to undergo deep cervical stimulation (DCS) in Toronto in the coming weeks.
“We’re just waiting for the phone to ring,” says his father, Renaud Forest. Though scared to death at the thought of their child ending up on the operating table, parents know this is a golden opportunity to improve their quality of life.
immeasurable pain
The soon-to-be-six-year-old boy suffers from dystonia, a degenerative disease that affects the connection between the brain and the body’s limbs. Its cause is the mutation of the KMT2B gene.
The defect of this gene in the boy prevents his body from producing fully functioning cells to compensate for those affected by dystonia, causing excruciating pain and uncontrolled movements of the lower limbs.
“Before he got the right medication, he could have seizures and convulsions and cry and scream non-stop for 18 hours. It was psychological torture for all of us,” says the father, who, like his wife Amélie Robitaille, had to quit his job to attend to his son’s needs.
In order to give William a “reasonably comfortable” life, they must administer 17 daily doses of 10 different drugs, including hyperpotent painkillers.
recalibration
According to what the CHU de Québec website says, DBS consists of “sending electrical impulses to a specific area of the brain,” which in this case controls movement, using electrodes to recalibrate it .
Photo Didier Debusschere
William’s parents and their eldest daughter Frédérique, who have endured multiple ordeals since the boy was diagnosed in June 2022.
The boy’s prospects are far from magical if he doesn’t undergo the complex surgery, doctors told his parents. His dystonia could be generalizing and affecting his body’s vital functions.
“The operation can only help him. Doctors have warned us that there is no 100% chance of success, but you have to try,” says Mr Forest.
The latter and Mrs. Robaille refuse to consider the likelihood that this great attempt will fail.
“I think we prefer not to think that his case could get worse,” confides the father, visibly choked with emotion. William has an exemplary attitude, he is happy and very brave through everything, like him we want to be positive. »
The boy’s relatives have started a GoFundMe campaign to help them.
crowdfunding
The goal of the initiative is to raise $50,000 so the Forests can adapt their home to their son’s needs, including installing an elevator.
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