A five-year-old child who is spasming uncontrollably due to a rare disease is awaiting delicate brain surgery that could help him.
Little William, originally from Saint-Isidore, in Beauce, will become the youngest Quebecer to experience deep cervical stimulation (DCS) in the coming weeks, in Toronto.
“We are just waiting for the phone to ring,” says his father, Renaud Forest. Even if they are worried to death at the thought of their child ending up on the operating table, parents know that this is a golden opportunity to improve their quality of life.
immeasurable pain
The soon-to-be six-year-old boy has dystonia, a degenerative disease that affects the connection between the brain and the body’s limbs. His is caused by the mutation of the KMT2B gene.
The defect of this gene in the boy prevents his body from producing fully functional cells to compensate for those affected by dystonia, causing immeasurable pain and uncontrolled movements of the lower limbs.
“Before he got the right medication, he could have cramps and spasms for 18 straight hours, crying and screaming nonstop. It was psychological torture for all of us,” says the father who, like his spouse, Amélie Robitaille, had to quit his job to devote himself to the needs of his son.
To allow William to live in a “semi-comfortable” way, they must administer 17 doses of 10 different drugs daily, including hyperpotent painkillers.
Recalibrage
According to what can be read on the CHU de Québec website, DBS consists of “sending electrical impulses to a specific area of the brain”, the one that controls the movements in this case, using electrodes to recalibrate it.
Photo by Didier Debusschere
William’s parents and their eldest daughter, Frédérique, who have gone through several ordeals since the boy’s diagnosis in June 2022.
The young boy’s prospects are far from a fairy tale if he does not undergo the complex operation, according to what the doctors explained to his parents. His dystonia could become generalized and affect the vital functions of his body.
“The operation can only help him. The doctors have warned us that it doesn’t have a hundred percent chance of succeeding, but you have to try it,” says Mr. Forest.
The latter and Mrs. Robitaille refuse to consider the probabilities that this great attempt will fail.
“I think we prefer not to think that his case could get worse, confides the father, visibly suffocated by emotion. William has an exemplary attitude, he is happy and very courageous through it all, like him, we want to be positive. »
Relatives of the young boy launched a GoFundMe campaign to help them.
Social financing
The objective of the initiative is to raise $50,000 to allow the Forests to adapt their house to better meet the needs of their son by installing, among other things, an elevator.