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.

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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

Guatemala considers sending high-risk gang members to military prisons

Amid the escalating crisis in Guatemala’s prison system, the government is considering transferring high-risk gang members to military-run detention facilities, a move that analysts say could help address overcrowding and the lack of control in civilian prisons.

The debate has gained urgency following the killing of ten police officers by gang members, reportedly in retaliation after the government refused to meet demands made by Aldo Dupie Ochoa, alias “El Lobo,” leader of the Barrio 18 gang, which authorities identified as responsible for the attack.

Guatemala’s Minister of Defense, Henry David Sáenz, told local media that the possibility of relocating high-danger inmates to military brigades has not been formally discussed. However, he noted that the practice is not new to the Armed Forces and said it is something that “was already being done.”

One example is the detention center located within the Mariscal Zavala Military Brigade, in Zone 17 of Guatemala City, where several inmates are held under military supervision. The facility also houses high-profile detainees, including former official Eduardo Masaya, who faces corruption charges.

In 2015, a ministerial agreement authorized the establishment of the Zone Seventeen Detention Center within the brigade, with a maximum capacity of 114 inmates in Area A and 21 in Area B. The agreement specified that the facility would be used exclusively for civilians or military personnel considered at risk of assassination.

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Additionally, since 2010, a prison has operated within the Matamoros Barracks in Zone 1 of Guatemala City, holding dangerous or high-profile inmates. However, media outlets have described these military detention centers as “VIP prisons,” particularly for former government officials such as ex-president Otto Pérez Molina.

International

Rights group says over 5,000 killed in Iran protests, mostly civilians

A U.S.-based human rights group said on Friday it has confirmed that more than 5,000 people were killed during the recent protests in Iran, most of them civilians allegedly shot by security forces.

Non-governmental organizations monitoring the toll from the crackdown on what have been described as the largest demonstrations in Iran in years said their work has been hampered by an internet shutdown imposed by authorities since January 8. They warned that the actual death toll is likely significantly higher.

The Human Rights Activists News Agency (HRANA), based in the United States, reported on Friday that it had verified the deaths of 5,002 people, including 4,714 protesters, 42 minors, 207 members of the security forces, and 39 bystanders.

The group added, however, that it is still investigating an additional 9,787 possible deaths, underscoring the difficulty of independently confirming information amid ongoing restrictions and repression.

International

Japan reopens Kashiwazaki-Kariwa Plant despite public concerns

La centrale nucléaire japonaise de Kashiwazaki-Kariwa, la plus grande au monde, a repris ses activités mercredi pour la première fois depuis la catastrophe de Fukushima en 2011, malgré les inquiétudes persistantes d’une partie de la population.

La remise en service a eu lieu à 19h02 heure locale (10h02 GMT), a indiqué à l’AFP Tatsuya Matoba, porte-parole de la compagnie Tokyo Electric Power (Tepco).

Le gouverneur de la préfecture de Niigata, où se situe la centrale, avait donné son feu vert à la reprise le mois dernier, en dépit d’une opinion publique divisée. Selon une enquête menée en septembre par la préfecture elle-même, 60 % des habitants se déclaraient opposés au redémarrage, contre 37 % favorables.

Mardi, plusieurs dizaines de manifestants ont bravé le froid et la neige pour protester près de l’entrée du site, sur les rives de la mer du Japon.

« L’électricité de Tokyo est produite à Kashiwazaki. Pourquoi seuls les habitants d’ici devraient-ils être exposés au danger ? Cela n’a aucun sens », a déclaré à l’AFP Yumiko Abe, une riveraine de 73 ans.

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La centrale de Kashiwazaki-Kariwa avait été mise à l’arrêt lorsque le Japon a fermé l’ensemble de ses réacteurs nucléaires à la suite du triple désastre de mars 2011 — un séisme, un tsunami et un accident nucléaire — survenu à Fukushima.