Health

A five-year-old child who is spasming uncontrollably due to a rare disease is awaiting delicate brain surgery that might 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 might 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.

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 might 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 might 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.

Almost a month ago, Simón Oliveros made the decision to resign from Mega, to start a new stage at TVN. Now the journalist continues with his role as a notary in the Hello, everyone, together with María Luisa Godoy and Eduardo Fuentes.

The communicator recently spoke with TimeX, where he referred to how his adaptation on the state channel has been, and what are the main challenges that come his way.

“Now I am going to complete a month on TVN. It was very crazy, we left quickly at the Viña Festival, then I had to animate the morning in this transition before Eduardo and Mari arrived. Now I am doing my job happy, very challenging, ”he commented to the aforementioned medium.

Although TVN’s morning show has not achieved the expected results, since it has been in last place in the morning rating, Oliveros is clear that he will have to make an extra effort to reverse the situation.

“We know that we have a tremendous challenge to get the matinee out of last place and we are going step by step through everything, but it is a long task… To think that this was short and fast was a chimera. It has never been easy, the only recipe is to row, work and try to find harmony with the audience, which is the most difficult. If it were easy, I would have a magic wand and we would be in other battles, ”he commented.

If there is something that characterizes Simón Oliveros, it is his offices, it is common to see him on the streets of Santiago talking with passers-by. This has become the distinctive feature of the communicator, who does not lose the motivation to be in the field.

“I became a journalist on the street, in the field and now that Alipio Vera has died, some statements have been refloated, journalists become on the street,” he said.

“Conceiving journalism outside of the street is wrong. Can you do both? You can, but that is my brand, it is my hallmark, where I became recognized with people, where I am close to people, where history is, where I find anecdotes, everything happens on the street, “concluded the face of TVN.