In the last 48 hours, Ecuador has lived with pain two hard news: the death of two little angels who were waiting for the only one medicine to allow them to save their lives: intravenous infusion Zolgensma, which costs USD 2.1 million.
On Saturday night, July 17, 2021, the death of the girl Amberly Veloz Alvarado, an infant 1 year and three months old.
Thousands of people, artists, migrants in different countries, ‘influencers‘ of social media and television talents had come together to try gather that amount of money and save Amberly through the hashtag #TodosSomosAmberly.
The fathers de Amberly son de Riobamba, but they currently lived in Quito, for him treatment to which the baby was constantly subjected.
The parents, Milton and Maria, also have another child. They both couldn’t work because they had to go constantly to respiratory therapies of the little girl, because her lungs they were filled with phlegm. Each of the therapies had a cost approximately USD 60 and had to be done to daily.
The girl had spinal muscular atrophy type 1. The so-called AME-1 is caused by a genetic defect what weakens the muscles so drastically that they become incapable from move.
In Portoviejo On Thursday, July 15, little Ian Rivera, who also suffered from Spinal Muscular Atrophy (SMA), died. The child was buried yesterday in Portoviejo.
On Saturday night several screen talents from around the country spread the news about Amberly’s death, and at the same time asked help By others kids they have the same disease and require the expensive medicine to continue with lifetime.
In Ecuador there are other three children with the same disease who continue to fight to get that amount of money that allows them to pay the medication, that should be injected before to meet the 2 years old.
In Cuenca there is the case of Nohelia Valverde. It is also in Portoviejo Derek Pinargote Garcia.
Sofía Caiche also posted the same video as Farías on Instagram and commented “Pain, frustration and helplessness feels my heart.”
CNN contacted Ministry from Health of Ecuador to know if it is planned to allocate a background from cooperation special or medical projects to treat SMA.
“We are carrying out the negotiations with the respective technical authorities. As soon as we have an answer, we will inform you in a timely manner, ”stated the official response issued by email.