In Venezuela, hit by crisis, terminally ill children struggle for survival

At the JM de los Rios Hospital in Caracas (Venezuela), 26 children with cancer or other diseases need a bone marrow transplant to save their lives. A few weeks ago, they were 30, but four have since died. Their mothers are looking for a miracle in a country where it is difficult to get antihistamines, vaccines and antibiotics. It is almost impossible to find a donor, but these mothers do not give up. They show strength in front of the camera, but cry silently while recalling the moments when they witnessed the slow worsening of their children's situation.

Women and their children, ages 4 to 17, tell of the daily hell they live in JM de los Rios, Venezuela's main public pediatric center. Every day is a battle against death. "We have been waiting for too long. Someone goes there every day, "says Evellyne Fernandez, mother of 15-year-old Edenny Martinez, who has been diagnosed with thalbademia major, a form of severe anemia requiring blood transfusions. every three weeks. The teenager, who dreams of becoming a lawyer, receives transfusions since the age of seven months and ended up catching hepatitis C. Children need Exaje, a drug that helps to reduce iron levels after a transfusion, but this option was not available since November.

Cristina Zambrano, a thalbademic teenager who dreamed of becoming a journalist before her condition worsened, is waiting for a bone marrow transplant since 2014. In 2016, she contracted hepatitis C after a blood transfusion. Jerson Torres, age 14, was diagnosed with severe aplasia of the bone marrow. Her mother, Verioska Martinez, says she is stubborn and sometimes says to her, "If I have to die, I will do it."

The lives of these children are limited and their living conditions prevent them from participating in daily activities such as playing football or going to the beach. Their growth and development slowed down. Only two centers carry out bone marrow transplants in Venezuela as long as there are compatible donors. One of them is public and the other is private. The surgery at the latter can cost $ 20,000 (£ 16,000), which is beyond the reach of the average Venezuelan. The Venezuelan government signed an agreement with Italy in 2006 so that children who do not have donors can be taken to the European country for transplantation. The program was financed by the state-owned oil company Petroleos de Venezuela, but has been in abeyance since 2018.

Nicolas Maduro's government accuses the United States of paralyzing the program and said that Donald Trump's government had imposed a blockage preventing the Italian Association of Bone Marrow Transplantation from paying. But health care organizations say the problem goes beyond that. Doctors, NGOs and health professionals allege that paralysis is the result of sanctions. Delays started in 2015 and the deterioration of hospitals began at least 10 years ago. According to the latest figures, 1,557 patients died due to lack of medical supplies and 79 power outages occurred between November 19 and February 9 in the health centers.

These mothers have become like a family, united around the suffering of their children. They help each other when their children miss good medicines. They even offer their homes to mothers from other parts of the country who have come for help in the capital. Edenny hosted Norilsa Aparicio and his 16-year-old son Oscar Bautista with thalbademia, who also needed a bone marrow transplant.

"Moms help each other. Sometimes I go to the hospital to ask if anyone has a medicine that I need and if someone gives it to me, I return the favor, "says Jaqueline Sulbaran, mother of Carlon Rincon, 10 years old, who has Down syndrome leukemia. His mother says that he has cured but that he has to undergo chemotherapy for two years. His treatment at the hospital is on hold because the air conditioning is down.

Four children died this month while waiting for transplants. Among them, Robert Redondo, seven, has died of complications. He needed two antibiotics to treat serious infections that his mother was unable to detect. The deaths of these children displaced Venezuela and, on May 26, health professionals and parents protested in front of the JM de los Rios hospital to demand solutions to a health crisis that has plagued more than five years.

EPA