“It is not a cure, but it is a hope for the life of our son,” said the father
Duchenne muscle dystrophy diagnosis (DMD), Piccolo Caio, just 7 years old, faces a rare and degenerative genetic disease that gradually weakens the muscles of the body. The family, after a long medical journey, was managed in court the right to access the Elessys drug, the only therapy currently able to slow down the effects of the condition. Despite the favorable injunction, the union has not yet respected the decision.
In an interview with Land nowThis Thursday, the 3rd, Caio’s father, Moises Alencar, reported the family journey from the first signs of the disease to the non -frequented judicial decision. “Gaius did not walk, there was also a delay in the speech and there for the 3 and 4 years. We felt it was normal. We were studying and, through the blood test, it was diagnosed with Trotjp, which is a problem in the liver, in the city of Paracatu (MG). Most pediatricians have no knowledge of all diseases, especially these rare. We had this genetic diagnosis of DMD.”
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Confirmation of dystrophy shocked the family. “For us, it was a bomb, why where does this come from? We were a traditional family, like the other, and we really escaped control. Is our son dying? Is there no care?” Remember Moses.
Hope invented the first studies of Elevidysin the United States, in the last two years. On the basis of these data, the family sought a private prescription in San Paolo, since medicine had not yet been approved by Anvisa, who prevented doctors from prescribing it. Today, with the favorable injunction, the urgency is even greater: “Let’s start this action and this race against time. The fears of the deadlines for the judge to give a lot of decision, because every day he loses strength. And there is no regression. There is no way to return to the muscles.”
Caio needs an intense routine of care. Its treatment requires physical therapy, employment therapy and speech therapy of the face muscles. “Children who have this disease are children who live with pain. It is difficult for us to imagine such a thing. Gaius is extremely happy, but lives with pain as normal. It is like cramps in the abdomen, legs, arms, hands.”
The game must also be controlled: the child must be active, but he cannot force the muscles too much. “It’s a 24 -hour job. We haven’t slept since he is 4 years old. We monitor his breath and his heart.”
The age group between 8 and 12 years is fundamental in the progress of the disease. According to Moses, this is the period in which the child usually loses movements according to a wheelchair. “If this happens, it is irreversible.”
Anvisa’s authorization for the use of Elessys is valid only up to 7 years, 11 months and 29 days. That is, the family has about six months to obtain the application inside the flyer. According to the lawyer Jakeline Banhara, the cost of treatment in Brazil is about $ 18 million, but the union can acquire the drug for about $ 14 million, with an institutional discount.
“It is not a cure, but it is a hope for the life of our son,” said Moses.
Source: Terra
Ben Stock is a lifestyle journalist and author at Gossipify. He writes about topics such as health, wellness, travel, food and home decor. He provides practical advice and inspiration to improve well-being, keeps readers up to date with latest lifestyle news and trends, known for his engaging writing style, in-depth analysis and unique perspectives.
