International
Chilean mother travels 1,300 kilometers on foot to try to save her son with dystrophy
In the city of Ancud, one of the most important of the Chiloe archipelago, in the south of Chile, there is no hospital, so if one of its about 165,000 inhabitants gets sick, he must take the ferry and travel about 50 kilometers to reach the neighboring city of Puerto Montt, the nearest place.
Camila Gómez, a young mother, decided to take a trip but this time to walk to the Palacio de la Moneda, in Santiago de Chile, more than 1,300 kilometers from her home, to raise funds and make visible the drama of her son Tomás, who suffers from Duchenne muscular dystrophy, one of the so-called “rare diseases”, which almost no one worries and no one finances.
Its main objective is to help collect the nearly four million dollars that costs a vital treatment that does not exist in Chile – it must be imported from the United States – and that would help stop the progression of the child’s ailment, barely five years old.
“Tomás has Duchenne muscular dystrophy in a neuromuscular degenerative disease that gradually weakens the muscles, the respiratory system and the heart, which leads to premature death,” he explains in one of the highs of his journey.
“In Chile there is no type of treatment for this disease, but in the United States there are several treatment options, there are three and here they told me that it was not possible to cover a medicine that is abroad. And it motivated me to do this walk, this physical effort,” he adds.
Gómez regrets that no one, neither the precarious public service nor the greedy private insurance, has offered him an exit in the country, although his son “does have options abroad.
“That’s why we decided to walk, to make the disease visible and take it very particularly to collect the 3.9 million dollars that the drug that is administered for the only time in a lifetime costs. So far (its administration) is approved until the age of four and five. Tomás is five and a half years old. So we are against time,” she urges in anguish.
Even so, hope has not been erased from his face and sometimes, especially when asked about solidarity, he outlines a smile of love and trust.
“We are all aware of the great health deficit, that Chile is a country very backward in health, unlike other more developed countries and we are all aware of that. So people have empathized, supported and contributed to the campaign,” he says.
Along with this mother, who left Ancud on April 28, her husband and father of Tomás, Alex Ross, a friend Álvaro Neira and Marco Reyes, president of the Duchenne Families corporation in Chile, who has two teenage children with the same disease and who proposed the Ross Gómez family to the odyssey.
“I am the logistical support for Camila and Marco who have been walking from Chiloé. I assist them on the way, usually with a change of clothes, food, food, I manage the lodging,” explains Alex.
“(Camila) Walk through Tomás, because we are against time, but he also does it so that no mom has to do it,” he says.
Camila’s third objective is to be able to speak in person with the President of the Republic, Gabriel Boric, to urge him to promote a bill to Congress that allows improving the coverage of rare diseases in the country, and medical assistance in rural areas, abandoned by the state in a country where the privatization of health care prevails.
Neira joined the walk because he was moved by Tomás’ suffering but also because he is worried that “in Chile we do not have the means, a clinic where we can have these medicines, that we have to go to this.”
Tomás was diagnosed in March 2023 with Duchenne’s syndrome, the most common but also most severe form of this type of muscular dystrophy that is triggered by a defective gene that affects dystrophin, a protein that helps keep the body’s cells intact.
It causes problems when walking and running, fatigue, learning difficulties and heart and respiratory deficiencies, and those who suffer from it usually have a life expectancy of between 20 or 30 years in difficult conditions.
With more than 700 kilometers of love in her terrified legs, this mother hopes to arrive in the Chilean capital at the end of this month of May from Chiloe, where there is a movement so that the spending on a bridge that they believe is unnecessary, is dedicated to the construction of a perentory hospital
International
Five laboratories investigated in Spain over possible African Swine Fever leak
Catalan authorities announced this Saturday that a total of five laboratories are under investigation over a possible leak of the African swine fever virus, which is currently affecting Spain and has put Europe’s largest pork producer on alert.
“We have commissioned an audit of all facilities, of all centers within the 20-kilometer risk zone that are working with the African swine fever virus,” said Salvador Illa, president of the Catalonia regional government, during a press conference. Catalonia is the only Spanish region affected so far. “There are only a few centers, no more than five,” Illa added, one day after the first laboratory was announced as a potential source of the outbreak.
Illa also reported that the 80,000 pigs located on the 55 farms within the risk zone are healthy and “can be made available for human consumption following the established protocols.” Therefore, he said, “they may be safely marketed on the Spanish market.”
International
María Corina Machado says Venezuela’s political transition “must take place”
Venezuelan opposition leader María Corina Machado said this Thursday, during a virtual appearance at an event hosted by the Venezuelan-American Association of the U.S. (VAAUS) in New York, that Venezuela’s political transition “must take place” and that the opposition is now “more organized than ever.”
Machado, who is set to receive the Nobel Peace Prize on December 10 in Oslo, Norway — although it is not yet known whether she will attend — stressed that the opposition is currently focused on defining “what comes next” to ensure that the transition is “orderly and effective.”
“We have legitimate leadership and a clear mandate from the people,” she said, adding that the international community supports this position.
Her remarks come amid a hardening of U.S. policy toward the government of Nicolás Maduro, with new economic sanctions and what has been described as the “full closure” of airspace over and around Venezuela — a measure aimed at airlines, pilots, and alleged traffickers — increasing pressure on Caracas and further complicating both air mobility and international commercial operations.
During her speech, Machado highlighted the resilience of the Venezuelan people, who “have suffered, but refuse to surrender,” and said the opposition is facing repression with “dignity and moral strength,” including “exiles and political prisoners who have been separated from their families and have given everything for the democratic cause.”
She also thanked U.S. President Donald Trump for recognizing that Venezuela’s transition is “a priority” and for his role as a “key figure in international pressure against the Maduro regime.”
“Is change coming? Absolutely yes,” Machado said, before concluding that “Venezuela will be free.”
International
Catalonia’s president calls for greater ambition in defending democracy
The President of the Generalitat of Catalonia, Salvador Illa, on Thursday called for being “more ambitious” in defending democracy, which he warned is being threatened “from within” by inequality, extremism, and hate speech driven by what he described as a “politics of intimidation,” on the final day of his visit to Mexico.
“The greatest threat to democracies is born within themselves. It is inequality and the winds of extremism. Both need each other and feed off one another,” Illa said during a speech at the National Autonomous University of Mexico (UNAM) in Mexico City.
In his address, Illa stated that in the face of extremism, society can adopt “two attitudes: hope or fear,” and warned that hate-driven rhetoric seeks to weaken citizens’ resolve. “We must be aware that hate speech, the politics of intimidation, and threats in the form of tariffs, the persecution of migrants, drones flying over Europe, or even war like the invasion of Ukraine, or walls at the border, all pursue the same goal: to make citizens give up and renounce who they want to be,” he added.
Despite these challenges, he urged people “not to lose hope,” emphasizing that there is a “better alternative,” which he summarized as “dialogue, institutional cooperation, peace, and human values.”
“I sincerely believe that we must be more ambitious in our defense of democracy, and that we must remember, demonstrate, and put into practice everything we are capable of doing. Never before has humanity accumulated so much knowledge, so much capacity, and so much power to shape the future,” Illa stressed.
For that reason, he called for a daily defense of the democratic system “at all levels and by each person according to their responsibility,” warning that democracy is currently facing an “existential threat.”
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