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.

Advertisement

20240920_mh_amnistia_fiscal_728x90

20240813_lechematerna_728x91

20240701_vacunacion_728x90

20231124_etesal_728x90_1

domfuturo_netview-728x90

20240604_dom_728x90

20230816_dgs_728x90

20230601_agenda_primera_infancia_728X90

CEL

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.

Advertisement

20240920_mh_amnistia_fiscal_728x90

20240813_lechematerna_728x91

20240701_vacunacion_728x90

20231124_etesal_728x90_1

domfuturo_netview-728x90

20240604_dom_728x90

20230816_dgs_728x90

20230601_agenda_primera_infancia_728X90

CEL

“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.

Advertisement

20240920_mh_amnistia_fiscal_728x90

20240813_lechematerna_728x91

20240701_vacunacion_728x90

20231124_etesal_728x90_1

domfuturo_netview-728x90

20240604_dom_728x90

20230816_dgs_728x90

20230601_agenda_primera_infancia_728X90

CEL

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