In Venezuela, Kids With Cancer Need True Heroes
In Venezuela, pediatric oncology patients and their relatives struggle with a parent’s worst nightmare... and with a collapsed health system. Fundanica, a foundation in Valencia, walks with them every step of the way.
Photo: Noticia Al Minuto, retrieved.
“Why does this hospital smell like a restroom for truck drivers?” was the first thing I thought. Hospitals should smell of alcohol and gauze, like someone compulsively cleans and disinfects and sterilizes all day. This one, the main hospital in Venezuela’s third city in population, Valencia, smells like pee, there’s no air conditioning and a sign 20 meters from the main entrance reads “Please be mindful. Use the restrooms. Keep your hospital clean. Thank you.”
One does not simply walk into a public hospital in Venezuela. Every hospital has guards, either from paramilitary colectivos, security forces or chavista leaders. Reporters aren’t welcomed. Even family members have restricted access to patients and facilities because chavismo doesn’t want any more pictures of the decay out there. They let me go inside because I was with Virginia Segovia, from Fundanica (Fundación de Ayuda a los Niños con Cáncer) but we still had to say the name of another NGO at the door, just in case. Virginia and I are carrying bags with baby formula, books and clothes to donate. I was assured the odds of me being let inside increased if I brought something. I didn’t bring anything, I’m just helping Virginia with her bags, shame on me.
There’s only one elevator in this wing of the hospital and it’s for patients, so we take the stairs. Virginia stops to say hi to someone she recognizes. A mother holds a toddler and Virginia asks about her other kid and how she’s doing. No further questions, she just gives her formula and the 20-something woman’s eyes light up. She says thanks with her mouth, but her eyes are 1,000 times more grateful than her lips. We make a left and go inside, to the pediatric oncology wing.
24 years trying to help
“Fundanica was founded almost 24 years ago,” Virginia told me the day before. “In our first 21 years, we lost four or five kids per year. In the last 26 months, almost 100 kids have died.”
In September 2018, Fundanica registered 180 patients and tried to help them all. Today, they care for 60 patients only, because some of the children have unfortunately died and the rest left the country to get treated elsewhere. The most common types of cancer among the patients Fundanica tries to help are leukemia, Wilms tumor, lymphomas, osteosarcoma, and neuroblastoma.
Fundanica’s mission is to help kids with cancer; before the humanitarian crisis, they helped pediatric oncology patients with labs, medicine, and treatment. Now, their mission has expanded.
Fundanica’s mission is to help kids with cancer; before the humanitarian crisis, they helped pediatric oncology patients with labs, medicine, and treatment. Now, their mission has expanded to finding bed sheets, clothes, books, and food. Not only for the patients, but for their relatives, too.
The team Virginia leads has no more than ten people. One of the many ways to help is contributing to their Apadrina un sueño program, or buying their calendar, volunteering if you’re near Valencia, donating medicines, or maybe writing to see what they need. They send donors periodic reports about what the money is buying and which patients got the medicine or medical supplies people donated.
Strong kids, stronger mothers
To enter the pediatric oncology wing, mouths must be covered and blue gowns must be worn. Ideally, these should be brand new every time you walk inside, but those are a luxury so they recycle. I struggle to tie mine, Virginia pulls hers from her purse, ties it behind her head in a second and walks inside a room.
Endrimar’s mom is sad. Her 7-year-old is asleep. “It’s important to us that you know Fundanica is always there. You can call me whenever you need,” Virginia says. Endrimar had a really high fever the day before, then it got better, and now she’s burning again. Her mom is worried, because she has pneumonia, too. Her little corner is decorated with dolls and homemade “get well soon” posters.
The mother shows me a piece of paper that acts as a prescription. They have to go to Caracas to get an immunochemical exam that, 22 days ago, was BsS. 350,000, over 18 minimum wages. I don’t know how much money she makes, but I’m guessing it’s not that much or Endrimar wouldn’t be a Fundanica patient. Endrimar has to get over this fever so she can travel to Caracas, at least two hours away, get the exam she needs, and then return to Valencia for treatment. I smile at Endrimar, she tries to smile back. Her mom says she’s a little weak today, looking tired, sad and worried. I can tell she doesn’t want to talk so I shut up. She looks at her daughter and still smiles the purest smile when the girl looks up. I have no words to comfort this woman so I look at the dolls and make fun of myself. I fail in my mission to cheer them up.
Someone comes in to donate food. One for Endrimar, one for her mom. Virginia says we should go to the next room and meet María, who’s been in the hospital for two months.
María painted her own decorations. She’s almost a teenager and her hair is starting to grow back. At first, I let Virginia talk, but I can feel María’s eyes on me.
The first thing she says to me is that she’s going to be an aunt and she needs clothes for her niece or nephew. When she asks if I have a foundation, I say no. “I’m an actress.” I overheard she wanted to be in the Miss Venezuela pageant seconds before, so I can start there. She sits up. “What do you mean there are acting schools? Where are those? Are they expensive? Do they take anyone?” I explain they only take students who are disciplined, who really want to learn and that plenty of schools offer scholarships. I promise I’ll ask around about schools in Valencia, and she says “I’m from Puerto Cabello!” My bad. This girl has fire in her eyes, she’s unapologetic and honest. She’s a rebel. I like her.
“Someone brought water, who brought water?” Virginia points out.
The mother shows me a piece of paper that acts as a prescription. They have to go to Caracas to get an immunochemical exam that, 22 days ago, was BsS. 350,000, over 18 minimum wages.
Naguanagua, San Diego, El Trigal, Prebo, La Viña and many other areas of Valencia have experienced water supply issues for years. The extremely polluted waters of Valencia damaged the entire network of underground sources that serve the region, and neither the governor nor the mayors give answers. There’s no constant running water in Valencia’s Central Hospital either, dry for 24 months now.
“See, they have to wash everything in the river (the also polluted Cabriales, around 20 blocks from the hospital). On Saturday, María’s mom told me she walked four hours from pharmacy to pharmacy, to find María’s meds. The medicine was BsS. 30,000 and she only had 3,000. She asked for money on the street but then she remembered about ‘0800-Virginia’. Everyone laughs. “She said she was embarrassed to ask, but I came with a friend, we bought the medicine and then, when I saw her, she had a gigantic bag of things she needed to wash in the river.”
“Bring your own soap, bring your own medicine, bring your own toilet paper,” María’s mom says. Nothing stops this woman, I see where her daughter gets it from. She doesn’t wait for public transport, she walks everywhere because it’s faster than waiting for the bus. Every time she needs to go to Fundanica, she has to walk around 90 minutes, and if she needs to go to the lab where Fundanica often sends their patients, it’s a 90-minute walk, too. She does that often and still smiles when she tells me the story.
“Es que me puyan mucho,” whispers María, meaning that she gets too many shots. Virginia handles it like the boss she is.
What can be said, then, about those responsible for this crisis? The answer was beyond my grasp then, and now. For the moment, I focus on the hope of a new nephew, of acting classes, of a future. Hope can get you a long way and, when it doesn’t, it’s only because of organizations like Fundanica that carry us onward.
Virginia also runs, with her family, one of the most important private primary and secondary schools in the region. In the car, I ask her how she does it. It’s three days a week, where the days are gloomy and the nights are pitch-black. She’s honest about it: “I had to help. What they go through is soul-crushing, yet they do it. With a sick kid, what’s normal becomes heroism.”
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