(29 May 2024)
ASSOCIATED PRESS
San Francisco de Mostazal, May 29, 2024
1. Various of Camila Gomez walking
SOUNDBITE (SPANISH) Camila Gómez++PARTLY OVERLAID WITH SHOTS 2 TO 6++
“When he was diagnosed with this medication, it was not yet approved by the FDA. They were in the study phase, so it was several months that we had nothing, and we were in mourning, so to speak, suffering that our son had no other option than to follow the natural course of the disease. But when this came out, it was like a light of hope for us and even though the price was very high, there was at least something to fight for… Marcos, who is the president of the corporation to which we belong, came up with this idea. He invited me and it seemed like a very good idea to raise the money and fortunately it worked. I never thought I would raise the total within this month "Yes, I thought I was going to gather something, but I never thought about this level of empathy and solidarity from people."
2. Camila Gomez walking
3. Man waving
4. People greeting Camila Gomez
5. Camila Gomez walking and greeting people
6. Camila Gomez passing by a banner: #We are part of the million
Santiago, May 29, 2024
7. Camila Gomez and Marcos Reyes entering presidential palace “La Moneda”
8. Camila Gomez and Marcos Reyes with president Gabriel Boric
STORYLINE:
Luego de que su hijo de 5 años fue diagnosticado con una grave enfermedad genética el año pasado, Camila Gómez decidió recorrer los más de 1.300 kilómetros que separan la sureña isla Chiloé de Santiago de Chile.
El miércoles llegó al Palacio de La Moneda y se reunió con el presidente Gabriel Boric tras recorrer durante un mes las carreteras del país en una campaña para recaudar los fondos para el medicamento para su hijo, disponible sólo en Estados Unidos, y concientizar sobre enfermedades raras y la necesidad de tratamientos accesibles.
El pequeño Tomás Ross padece distrofia muscular de Duchenne, un trastorno genético que se caracteriza por el deterioro y debilitamiento progresivo de los músculos. Estados Unidos es el único país que ofrece un medicamento para tratar la condición, cuyo valor asciende a unos 3,7 millones de dólares.
Marcos Reyes, presidente de la Corporación Familias Duchenne Chile y padre de gemelos con la misma enfermedad caminó al lado de Gómez.
Cuatro días antes de llegar a su destino Gómez logró recaudar a través de donaciones el monto necesario para llevar a su hijo a Estados Unidos.
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