International
The mother who decided to walk 1,300 kilometers in Chile to get an expensive medicine and save her son from a serious illness
Walking the more than 1,300 kilometers that separate the commune of Ancud in Chiloé from the Palacio de la Moneda in Santiago in Chile may seem like a chimera to many.
Not so for the Chilean Camila Gómez, a mother who completes this challenge with the goal of raising 3.5 billion pesos (US$3.7 million) to buy a vital medicine for her five-year-old son and make visible the cause of patients with rare diseases in Chile.
Time is pressing. His son, Tomás Ross, suffers from Duchenne muscular dystrophy, a severe ailment that worsens quickly. If you do not receive the drug as soon as possible, it will be difficult to stop the disease.
“It is a very expensive medicine and a disease that in Chile has no opportunities, but there are opportunities abroad,” Gómez tells BBC Mundo.
Thousands of Chileans turned to Gómez’s case, whose determination went viral in the country.
The mother left Ancud on April 28 with Marcos Reyes, president of the Duchenne Families corporation in Chile, who also has two teenage children with the disease.
It was precisely Reyes who suggested the idea of the walk to Gómez.
“We walk for all the children and families who suffer from the disease. Time is running out,” Gómez said in an interview with the 24-hour national news.
The goal, in addition to raising funds and making their causes visible, is to get Chilean President Gabriel Boric to “bring a bill to Congress” that allows to improve the coverage of rare diseases in the country, as Reyes explains to BBC Mundo.
“He was born healthy, without any problem or complication, until at the age of four we realized that he had difficulty climbing stairs and performing some types of physical activity,” Gómez said on social networks.
“Until that moment there was no cure, but for a few months we have had a hope; in the United States the first drug was approved whose objective is to stop the progression of the disease,” Gómez continued.
This drug is marketed as elevidys and is administered intravenously in patients who, like Ross, are between four and five years old.
There are several types of muscular dystrophy, although Duchenne is the most common form and also one of the most severe.
The disease is unleashed due to a defective gene that results in the absence of dystrophin, a protein that helps keep the body’s cells intact.
Patients can develop problems when walking and running, fatigue, learning difficulties and cardiac and respiratory deficiencies due to the weakening of vital muscles in these functions.
The British national health services indicate that it normally affects young children and that people with this ailment usually live until they are 20 or 30 years old.
Gómez talks to BBC Mundo this Sunday, May 12, in “a little pause, while eating a little.”
It has already been more than two weeks of a journey that has about half left.
At the time of speaking, he is at the Púa toll booth, in the Araucanía Region, still more than 600 kilometers from the capital.
“This journey is crazy, but we think it’s turning out more than imagined,” says Gómez.
The first week was hard, but the mother says that with the passing of the days everything is getting easier.
“It’s impressive how the body adapts to the rhythm and it’s not so terrible anymore,” he says.
He is also helped by the emotional impulse he received by surprise last Friday, May 10 on the occasion of Mother’s Day.
Her son Tomás found her in the city of Temuco, accompanied by her father Alex Ross, to give her a hug, a bouquet of flowers and a recharge of encouragement.
“The boy knows that his mother gathers talks to find him a remedy, but he was only there for a while and turned to Chiloé. Because of the disease he has, he shouldn’t be cold,” Alex Ross tells BBC Mundo.
By May 10, the family had managed to raise more than half of the funds.
Gómez documents his tour on his social media accounts, where he receives thousands of messages of support, hundreds of thousands of views in his videos, the attention of the press and the company of other walkers who join in some sections of his tour.
“This has grown so much that I must help with the whole logistical issue: I look for accommodation, food, I assist them on the route with dry clothes, I look for podiatrists, kinesiologists and medicines,” says Alex Ross.
Camila Gómez and Marcos Reyes expect to arrive in La Moneda at the end of May, depending on the weather conditions.
A long way to make its causes visible that goes beyond the more than 1,300 kilometers that they will have traveled at the end of their journey.
International
The AP agency sues the Trump Government after being banned for writing Gulf of Mexico
The American press agency Associated Press (AP) announced this Friday that it has sued three members of the Donald Trump Administration after being banned from the Oval Office and the presidential plane Air Force One for not complying with the directive of calling the Gulf of Mexico the Gulf of America.
“The press and all people in the United States have the right to choose their own words and not to be retaliated for it by the Government. The Constitution does not allow the Government to control freedom of expression,” the media maintains.
In its style guide, AP decided to continue calling the Gulf of Mexico “by its original name”, still mentioning the new name chosen by Trump, since it is a body of water that shares a border with Mexico and Cuba.
The White House formally blocked AP’s access to the Oval Office and Air Force One on February 14. “We are very proud of this country and we want it to be the Gulf of America,” Trump said on Tuesday.
The agency’s lawsuit, of 18 pages and filed before a federal court in Washington DC, alleges that they have decided to take this step to claim their right to editorial independence and prevent the Executive from coercing journalists to use only a language approved by it.
Trump signed the executive order to change the name to Gulf of America on January 20, the first day of his return to power. He later named February 9 as ‘ Gulf of America Day’.
The AP complaint is specifically directed against the president’s chief of staff, Susie Wiles, his number two, Taylor Budowich, and the White House spokeswoman, Karoline Leavitt.
This Thursday, more than thirty US media asked the Government to restore AP’s participation in presidential events and not to take into account “the editorial point of view” when limiting access to the White House.
Among the signatories are the television networks Fox News and Newsmax, with a conservative tinge, in addition to other large newspapers such as The New York Times, The Washington Post, CNN, The Wall Street Journal or The Atlantic.
AP highlighted when reporting on his complaint that this Friday Trump referred to that agency as “radical left-wing lunatics”: It is “a third-rate company with a first name,” he said about it, the main one in the country and founded in 1846.
International
Buenos Aires advances legislative elections to May 18 and suspends the primaries
The Legislature of the city of Buenos Aires approved this Friday the suspension of the open, simultaneous and mandatory primary elections (PASO), a measure that, according to the deputy head of government, Clara Muzzio, “allows to save 20 billion pesos (about 18,894 million dollars)”, and advanced the legislative elections for May 18.
“The City Legislature suspended the PASO, a measure that saves $20 billion for neighbors,” Muzzio announced on Friday.
For his part, the mayor of the City, Jorge Macri, maintained that the PASO “were an expensive mechanism that only solved the problems of politicians, not of the people.”
The May 18 elections, which were originally scheduled for July, will be held through the Single Electronic Ballot system.
In that instance, the inhabitants of the city of Buenos Aires will elect their local legislators and, in October, they will have to return to the polls to define, together with the rest of the country, the composition of the chambers of Deputies and Senators.
“The fact that the elections are in May allows each Buenos Aires to decide on their own city, without being tied to national discussions,” said the mayor.
The project was approved in the Buenos Aires legislature with 55 votes in favor, 3 against and one abstention, after an agreement between the main political forces.
The suspension of the primaries in the City of Buenos Aires occurs one day after the Argentine Parliament approved the same measure at the national level.
The original project sent by the national government sought the elimination of the primary system but finally, given the lack of support for that objective, the government chose to promote an initiative that suspends them for this year.
The primary election system was first implemented in Argentina to define the candidates for the 2011 general elections, based on a political reform approved by Parliament at the end of 2009, with the aim of democratizing political representation, transparency and electoral equity.
According to the PASO system, to be qualified to compete in the general elections, candidates or lists of candidates must achieve at least 1.5% of the total votes in the primaries.
All parties are obliged to participate in the primaries, although they do not necessarily have to present more than one list of candidates to decide which one will lead to the general elections, an option for which the majority of the forces have opted in the last elections.
That is one of the reasons why the system has been questioned, among which are also its costs and the cumbersomeness of the organization.
International
Trump threatens to impose tariffs on governments that apply digital fees to US companies
The President of the United States, Donald Trump, signed an executive order on Friday that threatens to impose tariffs on foreign governments that apply digital fees to US companies, including Spain, the United Kingdom and France.
The order states that “foreign governments have exercised a growing extraterritorial authority over US companies, particularly in the technology sector,” and directly cites the taxes on digital services that “several business partners” apply since 2019.
According to the text, the Trump Administration will impose tariffs on those governments that use taxes or regulations that are “discriminatory, disproportionate or designed to transfer significant funds or intellectual property from US companies to that government or its chosen domestic entities.”
Trump delegates to the US Trade Representative the possibility of “renewing investigations” on the so-called technology fees of Spain, the United Kingdom, France, Italy, Austria and Turkey, imposed in the first term of the Republican, and if so, “take all appropriate actions”, which would include the imposition of tariffs.
“US companies will no longer sustain failed foreign economies through fines and extortionational taxes,” says the White House document, which provides for a “process” for them to “report” these “disproportionate” measures to the Commercial Representative.
He also instructs him to investigate together with the Secretaries of the Treasury and Commerce whether in the European Union or the United Kingdom the use of products or services of US companies is “required or encouraged” to “undermine freedom of expression”, political activity or, “otherwise, moderate content”.
It also suggests to the Representative, among other things, to hold “a panel” with its partners of the T-MEC (Canada and Mexico) on the tax on digital services in Canada, and identify ways to achieve a “permanent moratorium on customs duties on electronic transmissions”.
The order does not mention any specific company, but mainly affects large technology companies such as Apple, Google (subsidiary of Alphabet), Meta and Amazon, which have precisely starred in a resounded approach to President Trump since he won the elections in November.
In his first term (2017-2021), Trump ordered to investigate the digital fees to his companies abroad and threatened to apply tariffs to the six countries indicated today; taxes were imposed in the government of his successor, the Democrat Joe Biden, and subsequently suspended.
Trump signed another executive order aimed at restricting access to US technology, especially in the field of artificial intelligence, what he calls “foreign adversaries”, including Cuba, Venezuela, Iran, Russia and China.
The executive order does not specify in detail what measures will be taken to restrict the access of these “foreign adversaries” to US technology.
Under the label of “foreign adversaries”, the order identifies China, Hong Kong, Macau, Cuba, Iran, North Korea, Russia and the “regime of Venezuelan politician Nicolás Maduro”, according to the text.
Trump justifies his decision with the argument that “economic security is national security” and maintains that the country must protect its sensitive infrastructures and technologies, from artificial intelligence to semiconductors and advances in biotechnology.
The executive order focuses especially on China, pointing out that companies linked to Beijing have used investments in the US to access key technologies and that the Chinese government is taking advantage of US technology to modernize its military apparatus.
Since his return to the White House on January 20, Trump has announced several restrictions on trade with the aim of balancing the trade balance and pressuring countries such as Mexico and Canada to make concessions on immigration and efforts against drug trafficking.
It has imposed a 10% tariff on China, which is in addition to the rates already applied during its first term (2017-2021).
Trump’s new restrictions come after his predecessor, Joe Biden, took steps to limit exports of semiconductors and artificial intelligence technology to China, which led Beijing to respond with export controls on graphite, a key material for electric vehicle batteries.
The AP agency sues the Trump Government after being banned for writing Gulf of Mexico
Buenos Aires advances legislative elections to May 18 and suspends the primaries
Trump threatens to impose tariffs on governments that apply digital fees to US companies
Tec de Monterrey honors one of its students for his contribution to nanotechnology in medicine
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