Children with Terminal Illness in Venezuela
Photographer: Miguel Gutierrez
A group of 26 Venezuelan children with cancer and other diseases need bone marrow transplants to save their lives. They have barely had time to learn what living means, yet death is so close. A few weeks ago, there were 30 of them, but four have passed away since. Their mothers seek a miracle in a country where getting antihistamines, vaccines and antibiotics is hard. Finding a donor is almost impossible, but these mothers are not giving up. The youngest is four and the eldest 17. The illnesses and poverty that mark their lives have united their mothers in their fight to save them. They show strength in front of the camera, but cry silently while recalling the critical moments in which they have witnessed their children worsen due to complications.
The women and their children narrate the daily hell they live at the J M de los Rios Hospital, the main public pediatric center of Venezuela. The wait is too long and each day is a battle won against death. 'We can't keep waiting, we have been waiting for too long. Someone goes everyday,' says Evellyne Fernandez, mother of 15-year-old Edenny Martinez, who was diagnosed with major thalassaemia, a form of severe anemia 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 getting hepatitis C. But there are other risks. 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. Her mother, Rosa Colina, says the hardest part is the multiple stints in hospital. Fourteen-year-old Jerson Torres was diagnosed with severe bone marrow aplasia. His mom 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. And their growth and development has slowed down. Only two centers 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, 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 program used to be funded by the state-owned Petroleos de Venezuela, but has been on hold since 2018.
The government of Nicolas Maduro blames the United States for program’s paralysis and says Donald Trumps' government imposed a block that prevents Italy's Association for Bone Marrow Transplant from paying. But healthcare organizations say the problem goes beyond that. Doctors, NGOs and healthcare professionals argue that the paralysis is a result of sanctions, given that the 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 09 February at healthcare centers.
These mothers have become like family, united despite their children suffering from different conditions. 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. Edenny was hosting Norilsa Aparicio and her son Oscar Bautista, a 16-year-old with thalassaemia. Oscar 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 we switch favors,' says Jaqueline Sulbaran, the mother of 10-year-old Carlon Rincon, who has Down syndrome and leukemia. 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 does not work anymore. And four children have died this month while waiting for transplants. They were six-year-old Giovanni Figuera, seven-year-old Robert Redondo, eight-year-old Yeidelberth Requena and eleven-year-old Erick Altuve. Robert and his mom were going to be interviewed by Efe on 23 May, but he 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.