Woman walked 31 days to seek help in treating her son with a rare disease

Camila Gómez began her journey on April 28, 2024 from Ancud (Chiloé) to Santiago, capital of Chile. His objective: to meet with President Gabriel Boric to request support in the treatment of his son, Tomás Ross, who suffers from Duchenne muscular dystrophy.

One of the motivations that Camila had for going to Santiago was to deliver some proposals to improve the system of access to high-cost treatments for rare diseases, such as the one that affects her little son and this Wednesday, May 29, 2024 , he did it.

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Previously, with enormous effort and dedication, The mother managed to raise 3.5 billion Chilean pesos (more than 15 billion Colombian pesos) necessary to acquire gene therapy with a drug called Elevidys, which could stop the progression of her son’s disease. This treatment will be administered to the child in the United States as soon as possible.

“I am nothing more than an ordinary mother who decided to fight for her son. After five months of campaigns, bingos and raffles that were not enough to cover the costs, I decided to take this path,” said Camila.

According to the Emol media, The woman has walked in the company of Marcos Reyes, president of the Familias Duchenne corporation of Chile who has two children with said disease..

“This proposal asks the president to promote a new institutional framework in our country, called ETESA, an evaluation of health technologies,” said Reyes.

Duchenne muscular dystrophy is a genetic disease that primarily affects male children and is characterized by progressive muscle degeneration. This condition, caused by mutations in the gene, leads to weakness and loss of mobility, usually manifesting in early childhood and progressing rapidly.

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This story has deeply touched the Chilean inhabitants, because This mother’s determination helps to make visible families with children who have rare diseases in the country and in the world.