One-year-old Derek was one of three Ecuadorian children with Spinal Muscular Atrophy (SMA) who received the world’s most expensive drug, Zolgensma, free of charge from the Ministry of Health. He died yesterday, Saturday, a week following undergoing surgery so that he no longer uses nasogastric tubes in Quito.
The Minister of Health, Ximena Garzón, published her most sincere condolences.
“May God shelter him in his arms and give his parents the strength to cope with this difficult situation. You will always be with us, as an indelible symbol, reminding us of the importance of caring for each child with SMA,” the official said on her networks. social.
The boy received the gene therapy he needed to survive since last October.
Derek’s parents, those who live in Portoviejo, have always been grateful to the people who supported them in networks and tried to help them achieve the medicine that was valued at 2.1 million dollars.
Babies with this disease should be treated with Zolgensma before their first birthday. Thanks to the fact that Derek managed to start therapy on time, he was able to celebrate his first year with his family on November 8.
However, there were other Ecuadorian babies who did not manage to get the most expensive drug in the world and died. They were the cases of Ian y Amberly.
For this reason, messages multiplied on social networks in memory of the battle that Derek waged.
“Derek left. But he learned of the human kindness of an entire country that forced the government to give him the most expensive medicine in the world. His case touched the most sensitive fibers: he humanized us,” shared journalist Luis Antonio Ruiz.
Spinal muscular atrophy is a genetic disease that drastically weakens the muscles, to the point that it makes it impossible to move and then damages the ability to swallow or breathe.