A five-year-old boy who is uncontrollably tall 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 now 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 for a better quality of life.
A boy just six years old has dystonia, a degenerative disease that affects the connection between the brain and body parts. It is caused by a mutation in the KMT2B gene.
The lack of this generic in the child prevents his body from producing well-functioning cells to compensate for the dystonia affected, causing immense pain and uncontrolled movement of the lower limbs.
“Before he got the right medication, he could have cramps and nerve spasms for 18 hours straight, crying and screaming nonstop. It was psychological torture for all of us,” says the father who, as his wife, Amélie Robitaille, had to leave his job to attend to the needs of his son.
In order to allow William to live in a “semi-comfortable” way, they must administer eighteen cups of different drugs every day, including hyperpotent pharmacopoles.
According to what can be read on the website of the CHU de Québec, DBS consists of “sending electrical impulses to a specific region of the brain” that controls movement in this case, using electrodes to recalibrate.
Photo by Didier Debusschere
William’s parents and their first-born daughter, Fredérique, who went through several trials since the child’s diagnosis in June 2022.
The perspective of the children is far from the story, if not complicated work, according to what is explained by the parents doctors. His dystonia could become generative and affect vital bodily functions.
“That the operation can only help him. The doctors warned us that we don’t have a 100 percent chance of success, but you have to try,” said Mr. Forest.
These and Madame Robitaille will deny the probability of this great effort failing.
“I think we should rather not think that his case could be made worse, to trust the father, who was visibly suffocated with emotion. William has a model attitude, he is happy and very strong, we want everyone to be positive like him. »
The boy’s cousins have launched a GoFundMe campaign to help.
The project’s goal is to raise $50,000 so that Silva can adapt his home to better meet his son’s needs by installing, among other things, an elevator.
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