The minor was one of the three children who in Ecuador was given a dose of a drug whose cost is 2.1 million dollars
PORTOVIEJO
Derek, the little boy from Porto Viejo who had been fighting against Spinal Muscular Atrophy (SMA), died on Saturday night the 22nd in Quito, where he was with his parents in the post-treatment of the application of the most expensive medicine in the world, a dose of Zolgensma , whose cost was 2.1 million dollars.
The news was spread the same Saturday night through the social networks of the child’s relatives and those who supported the previous year a campaign aimed at obtaining 2.1 million dollars so that the child could access treatment urgently. , because initially the State did not give them a solution, the relatives of several children with the same ailment indicated at the time.
By July 2021 there were 19 children in Ecuador who needed the dose, according to the Ministry of Health, which promised to get the medicine for them, which finally arrived in September 2021. By that date there were already 30 minors who should receive medicine to save their lives.
“I am devastated, I am dead in life. My little boy, my Derek, you left us. What pain I feel now, I don’t assimilate it. Your daddies…”, actress Sofía Caiche, one of the people who supported the initiative in favor of the child, wrote on her Facebook wall.
According to scientific reports, SMA is a genetic problem that does not allow normal muscle development and if it does not receive adequate treatment, it could cause death to the affected person in his first years of life.
Derek’s parents were notified by the Ministry of Public Health that the most expensive medicine in the world has already been obtained for them
Derek was one of the most visible faces in Ecuador for children suffering from SMA, a condition that requires treatment with what is considered the most expensive medicine in the world. In the case of this minor, 14 months old, and two other children, they obtained it last October through the Ministry of Public Health, after a fight they had waged months before.
The cause of Derek’s death is still unknown. His relatives still do not give more details of that.
In one of the last publications made through the page A Miracle for Derek, made on January 15, it was announced that the surgery with which the nasogastric tube was removed, which had practically accompanied him since his birth, was successful. , after the SMA condition was detected.
“Now we do feel very calm and not afraid that we will get bronchoaspiration and get aspiration pneumonia, so bye bye probe”; was written on that Facebook page.
Also on January 12, prior to the surgery to remove the probe, it was published that he had applied a gastric button to Derek so that the child would have a better diet.
Last November the family celebrated his first year of life. Derek was an example of this fight that parents carry out on behalf of their children with SMA.
It is unknown when the minor’s remains will arrive in his native Portoviejo. (I)
Paul is a talented author and journalist with a passion for entertainment and general news. He currently works as a writer at the 247 News Agency, where he has established herself as a respected voice in the industry.
