THE WAITING GAME
Miguel Gutierrez captures the bravery of terminally ill children struggling for survival in crisis-hit Venezuela
At the JM de los Rios Hospital in Caracas, Venezuela, 26 children with cancer and other diseases need bone marrow transplants to save their lives. A few weeks ago, there were 30 of them, but four have since passed away. Their mothers seek a miracle in a country where even getting antihistamines, vaccines and antibiotics is hard. Finding a donor is almost impossible, but these mothers are not giving up. They show strength in front of the camera, but cry silently while recalling the moments in which they have witnessed their children’s conditions slowly worsen.
The women and their children, who are aged between four and 17, narrate the daily hell they live at the JM de los Rios, the main public paediatric centre in Venezuela. Each day is a battle against death. “We have
been waiting for too long. Someone goes every day,” says Evellyne Fernandez, mother of 15-year-old Edenny Martinez, who was diagnosed with major thalassaemia, a form of severe anaemia that requires blood transfusions every three weeks. The teenager, who dreams of becoming a lawyer, has been receiving transfusions since she was seven months old and ended up contracting hepatitis C. The children need Exaje, a drug that helps reduce iron levels after having a transfusion, but this has not been available since November.
Cristina Zambrano, a teenager with thalassaemia who dreamed of becoming a publicist before her condition got worse, has been waiting for a bone marrow transplant since 2014. In 2016, she got hepatitis C after undergoing a blood transfusion. Fourteen-year-old Jerson Torres was diagnosed with severe bone marrow aplasia. His mother Verioska Martinez says he is stubborn and sometimes tells her: “If I have to die, I will.”
The lives of these children have been limited, their conditions preventing them from getting involved in everyday activities like playing soccer or going to the beach. Their growth and development have slowed down. Only two centres perform bone marrow transplants in Venezuela as long as there are compatible donors. One of them is public and the other is private, and having surgery at the latter can cost $20,000 (£16,000), which is out-of-reach for 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 transplants. The programme used to be funded by the state-owned oil firm Petroleos de Venezuela, but has been on hold since 2018.
We have been waiting for too long. Someone goes every day
The government of Nicolas Maduro blames the United States for the programme’s paralysis and says Donald Trump’s government imposed a block that prevents Italy’s Association for Bone Marrow Transplant from paying. But healthcare organisations say the problem goes beyond that. Doctors, NGOs and healthcare professionals argue that the paralysis is a result of sanctions. Delays began in 2015 and hospitals started deteriorating at least a decade ago. According to the latest figures, 1,557 patients have died due to a lack of medical supplies, and there were 79 power outages between 19 November and 9 February at healthcare centres.
These mothers have become like family, united around their children’s suffering. They help each out other when their children lack the right drugs. They even offer their homes up to mothers from other parts of the country who have come to the capital for help. Evellyne Fernandez was hosting Norilsa Aparicio and her son Oscar Bautista, a 16-year-old with thalassaemia who needed a bone marrow transplant too.
“Moms help each other. Sometimes I go to the hospital to ask if anybody has a drug that I need and if someone gives it to me then I return the favour,” says Jaqueline Sulbaran, the mother of 10-year-old Carlon Rincon, who has Down’s Syndrome and leukaemia. His mother says he has healed, but must have chemotherapy for two more years. His treatment in the hospital is on hold because the air conditioning is broken.
Four children have died this month while waiting for transplants. They include seven-year-old Robert Redondo, who passed away due to a complication. He needed two antibiotics for treating severe infections that his mother was unable to find. The deaths of these children have moved Venezuela, and on 26 May healthcare professionals and parents protested in front of the JM de los Rios Hospital, demanding solutions to a health crisis that has been going on for over five years.