A Chilean mother walked for a month to collect money for her son’s treatment: she raised almost USD 4 million

A Chilean mother walked for a month to collect money for her son’s treatment: she raised almost USD 4 million
A Chilean mother walked for a month to collect money for her son’s treatment: she raised almost USD 4 million

At the beginning of May, Camila Gómez began her march from Ancud to Santiago to raise awareness about Duchenne Muscular Dystrophy (DMD), and to urge Chileans to help her buy the medicine that little Tomás must receive within five months.

(From Santiago, Chile) He has been walking for more than 1,000 km and he still has a few more left to get to La Moneda to see the president Gabriel Boricbut he is happy and exultant: Camila Gomezthe hardworking mother who at the end of April began a walk from Chiloé to Santiago to save his son Thomaswho suffers Duchenne muscular dystrophy, confirmed this weekend that they have already achieved the goal of USD 3.9 million ($3.5 billion pesos) that, as a family, they had to raise to buy their expensive medicine.

“I am like shocked I still haven’t assimilated it because we continue walking…I think I’ll come to terms with it when we are in the United States and they give Tommy his medication. There I will only be able to rest”pointed to La Tercera as it passed through the O’Higgins Region (100 km south of Santiago).

The millionaire figure will allow him to ensure treatment for his 5-year-old son in the United States with the medication. Elevidysfrom the pharmaceutical company Sarepta, specialized in “rare diseases”.

Duchenne Muscular Dystrophy is a genetic disease which affects one child in every 3,300 inhabitants, according to statistics from the World Health Organization (WHO). The pathology is characterized by a muscular weakness It progresses rapidly, mainly affects men and appears at an early age. It affects all the muscles in the body: the legs, arms, heart and respiratory muscles.

Its treatment is essential from an early age to allow patients to extend their lives, which implies a exorbitant spending for families. Tomás is one of those children, but today he has new hope, since the medication in question is given only once in a lifetime between the ages of 4 and 5.

Tomás’ parents hope to travel to the United States in two weeks to administer the medication since time is of the essence.

Meanwhile the socialist senator, Juan Luis Castromember of the Health Commission, reported that the US ambassador to Chile, Bernadette Meehan, He offered to help Tomás’ parents with whatever was necessary, in order to ensure everything for their son’s treatment.

According to the parliamentarian, the United States embassy has followed the case from the beginning, “because the treating professional is North American, a prestigious doctorand the drug is approved by the FDA, which is the highest North American drug agency.”

He added that “first they told me that they have complete confidence in the medicine (Elevidys) because it has been studied, It is approved in an accelerated manner and it will be ratified now, we hope very soon. Therefore, there is no doubt about the therapeutic efficacies that the medicine is going to have.”

“And secondly they told me, pass on the information that the North American ambassador in Chile would be glad to receive it and collaborate when the trip is scheduled, so that the logistics and basically all aspects of the itinerary, whatever it may be, his time in the United States with Tomás, have the best possible facilities,” he announced.

“I think it is a good gesture from a friendly country like the United States, where the family is going to go to deposit all the money.” hope in that very innovative medicine, recently created by medical science and which could really save Tomás’ life. So it is a very important gesture that must be appreciate”Castro concluded.

Regarding an eventual collection of the tax contemplated in the Donations Law, which fluctuates between $630 to $700 million pesos (USD 750 thousand approx.), the senator said that “it would, frankly, be a absurdity “that the Chilean government would even try to collect taxes in such an extreme condition of vulnerability, in a humanitarian case.”

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