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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.

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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.

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“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.

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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

Deportation flight lands in Venezuela; government denies criminal gang links

A flight carrying 175 Venezuelan migrants deported from the United States arrived in Caracas on Sunday. This marks the third group to return since repatriation flights resumed a week ago, and among them is an alleged member of a criminal organization, according to Venezuelan authorities.

Unlike previous flights operated by the Venezuelan state airline Conviasa, this time, an aircraft from the U.S. airline Eastern landed at Maiquetía Airport, on the outskirts of Caracas, shortly after 2:00 p.m. with the deportees.

Interior Minister Diosdado Cabello, who welcomed the returnees at the airport, stated that the 175 repatriated individuals were coming back “after being subjected, like all Venezuelans, to persecution” and dismissed claims that they belonged to the criminal organization El Tren de Aragua.

However, Cabello confirmed that “for the first time in these flights we have been carrying out, someone of significance wanted by Venezuelan justice has arrived, and he is not from El Tren de Aragua.” Instead, he belongs to a gang operating in the state of Trujillo. The minister did not disclose the individual’s identity or provide details on where he would be taken.

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International

Son of journalist José Rubén Zamora condemns father’s return to prison as “illegal”

Guatemalan court decides Wednesday whether to convict journalist José Rubén Zamora

The son of renowned journalist José Rubén Zamora Marroquín, José Carlos Zamora, has denounced as “illegal” the court order that sent his father back to a Guatemalan prison on March 3, after already spending 819 days behind barsover a highly irregular money laundering case.

“My father’s return to prison was based on an arbitrary and illegal ruling. It is also alarming that the judge who had granted him house arrest received threats,” José Carlos Zamora told EFE in an interview on Saturday.

The 67-year-old journalist was sent back to prison inside the Mariscal Zavala military barracks on March 3, when Judge Erick García upheld a Court of Appeals ruling that overturned the house arrest granted to him in October. Zamora had already spent 819 days in prison over an alleged money laundering case.

His son condemned the situation as “unacceptable”, stating that the judge handling the case “cannot do his job in accordance with the law due to threats against his life.”

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International

Miyazaki’s style goes viral with AI but at what cost?

This week, you may have noticed that everything—from historical photos and classic movie scenes to internet memes and recent political moments—has been reimagined on social media as Studio Ghibli-style portraits. The trend quickly went viral thanks to ChatGPT and the latest update of OpenAI’s chatbot, released on Tuesday, March 25.

The newest addition to GPT-4o has allowed users to replicate the distinctive artistic style of the legendary Japanese filmmaker and Studio Ghibli co-founder Hayao Miyazaki (My Neighbor Totoro, Spirited Away). “Today is a great day on the internet,” one user declared while sharing popular memes in Ghibli format.

While the trend has captivated users worldwide, it has also highlighted ethical concerns about AI tools trained on copyrighted creative works—and what this means for the livelihoods of human artists.

Not that this concerns OpenAI, the company behind ChatGPT, which has actively encouraged the “Ghiblification”experiments. Its CEO, Sam Altman, even changed his profile picture on the social media platform X to a Ghibli-style portrait.

Miyazaki, now 84 years old, is known for his hand-drawn animation approach and whimsical storytelling. He has long expressed skepticism about AI’s role in animation. His past remarks on AI-generated animation have resurfaced and gone viral again, particularly when he once said he was “utterly disgusted” by an AI demonstration.

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